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9 End of Life Documents Everyone Needs

Learn about the most important end-of-life and estate planning documents, and discover which forms you should create now.

Updated September 11, 2023 | Written by Emily Crowley Reviewed by Susan Chai, Esq.

Many of us have considered writing a will, but you need several other legal documents to cover all aspects of your end-of-life care and wishes. Without them, your family members will have to make tough decisions on your behalf, not knowing what you would have wanted.

This illustrated guide explains the nine most important end-of-life documents. Plan for yourself and your loved ones and create these essential end-of-life planning documents today:

The nine legal documents covered in this infographic complement each other to form a comprehensive end-of-life plan. Let’s take a closer look at each.

#1 DNR (Do Not Resuscitate) Order

#2 living will, #3 last will and testament, #4 living trust, #5 financial power of attorney, #6 medical power of attorney, #7 organ and tissue donation, #8 funeral plan and obituary, #9 personal and financial records.

• What's Next?

Complexity level: Basic

A DNR form — also referred to as “allow natural death” or “no-code” — communicates that you don’t want to receive life-sustaining treatment in the event of cardiac or respiratory arrest.

In other words, if you want medical professionals to allow for a natural death instead of restarting your heart or performing CPR, you and your physician should sign a DNR order.

Create Your DNR Form Now!

Take control of your medical preferences by creating your DNR form with our user-friendly templates.

► READ MORE: What is a DNR?

Complexity level: Intermediate

A living will indicates your wishes for end-of-life medical decisions if you have been diagnosed with a terminal illness and cannot communicate. Having this document in place alleviates the emotional burden your loved ones may have from making tough decisions on your behalf.

Your living will should state your preferences regarding end-of-life medical care, such as:

• Tube feeding;
• Resuscitation;
• Comfort care and pain management;
• Mechanical ventilation;
• Antibiotics and other medications;
• Organ and tissue donation.

Even if you’re a registered organ donor with a DNR form, repeating these preferences in your living will is still a good idea.

Some states require an advance directive combining a living will and medical power of attorney.

Complexity level: Intermediate to Advanced

A last will and testament outlines how you want to distribute your assets after death. Also called a “will” or “last will,” this document should not be confused with a living will, which is used to document medical care preferences.

In this document, you name an executor (and successor executors) to manage your estate based on your wishes and assign beneficiaries to inherit assets.

You can also use your last will and testament to indicate funeral preferences, especially if you want to set aside funds for service.

Complexity level: Advanced

A living trust is a legal document that places your assets into a trust and designates how the assets will be distributed after your death. Different types of trusts allow you to manage your estate according to your preferences.

On top of the different types, trusts can also be revocable or irrevocable. Generally speaking, most people choose to create a revocable living trust, as it allows amendment while they are still living and competent. An irrevocable living trust, on the other hand, cannot be altered without a court order or the unanimous consent of all beneficiaries.

Unlike a last will, a trust avoids the probate process, saving your beneficiaries time and money.

Complexity level: Basic to Intermediate

A financial power of attorney (financial POA) gives a person of your choosing (called an agent , attorney-in-fact , or proxy ) the legal ability to act on your behalf and help manage your financial affairs.

With this highly customizable document, you can empower your agent with a range of financial decisions — from specialized tasks such as property sales to the comprehensive oversight of your entire scope of financial assets should you become incapacitated.

A medical power of attorney lets you appoint a healthcare proxy (or healthcare agent ) to make medical decisions on your behalf if you cannot communicate your wishes regarding medical treatments and care. Unlike a financial POA, this type of POA doesn’t give your agent access to your finances.

Some states require an advance directive combining a medical power of attorney with a living will.

You must register as an organ donor to donate your organs and tissues to someone in need after death.

Take a moment to ensure you are registered if this is part of your final wishes.

Planning your funeral can seem daunting, but it’s a tremendous gift to your loved ones to indicate your funeral preferences and set aside funds so they don’t have to plan while grieving.

Creating a funeral plan also allows you to consider how you’d like to be remembered — through a service, obituary , epitaph, or any other form you choose.

Organize your papers so that the right people can access them if you have a medical emergency. In addition to your personal and financial records , instructions for important matters, such as your medications, how and when bills are paid, and debts you’re owed.

What’s Next?

With these documents in place, you can ensure your family and medical professionals know how to fulfill your wishes in case you can’t express them yourself. Take steps today to ensure you have all the necessary estate planning documents to create a comprehensive estate plan and give yourself peace of mind.

Emily Crowley

Legal Content Editor

Emily Crowley is a staff writer at Legal Templates. Her background in nonprofit motivates her to improve access to legal advice in underserved groups, especially in end-of-life wishes and estate...

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Approaching Death: Improving Care at the End of Life (1997)

Chapter: 10 conclusions and recommendations, 10 conclusions and recommendations.

Our lives are time travel, moving in one direction only. We accompany one another as long as we can; as long as time grants us.

Joyce Carol Oates, A Letter to My Mother , 1996

We go toward something that is not yet.

Paul Tillich, The Eternal Now , 1959

Dying is at once a fact of life and a profound mystery. Death comes to all, yet each person experiences it in ways that are only partly accessible to the family member or physician, the researcher or philosopher. In principle, humane and skillful care for the dying is a social obligation as well as a personal offering from those directly involved. In reality, both society and individuals fall short of what is reasonably, if not simply, achievable.

Evidence and experience both indicate that much dying is far harder than it should be. Like the mythic king Tantalus, who reached for fruit and water just beyond his grasp, the dying person has too often been destined to seek but not find a pain-free and peaceful death. Such a fate need not be; better deaths are possible now.

This is not to claim that dying and death can be made easy, although certain illnesses tend to bring less-difficult deaths than others; nor is it to suggest that caring well for those approaching death can be made an exact science or flawless art. Caring well involves a frequently stressful, imperfect effort to balance science with sentiment, honesty with hope, patterns of care with room for exceptions.

This report has identified ways in which clinicians, educators, and communities do not care adequately for those approaching death. It has pointed to steps that can improve care at the end of life and sustain improvements through difficult times. It has also highlighted the reasons for believing that professionals, policymakers, and the public are ready to support such steps. These reasons range from the examples of well-known men and women facing death with grace to the focus on deficiencies in care

stimulated by the debate over assisted suicide. In sum, the timing appears right to press for a vigorous societal commitment to improve care for the dying. Such a commitment would motivate and sustain local and national efforts to strengthen and apply the existing knowledge base, reform procedures and policies that impede good care for the dying, and stress the caring functions of health delivery systems.

Today and Tomorrow

The preceding chapters have profiled important aspects of dying in America. They have noted that three-fourths of those who die are elderly and that most people who die are covered by Medicare or other federal, state, or local programs for older, disabled, or impoverished people. Compared to earlier times, death now comes more often in old age from a chronic or progressive disease. Most deaths occur in institutions, mainly hospitals and, to a lesser extent, nursing homes. The proportion of people who die at home is, however, increasing. Only a minority of all deaths involve people cared for by formal hospice programs, and the majority of these involve cancer diagnoses. All patients can potentially benefit from good palliative care, but hospice programs as organized and financed in the United States are most applicable to those with relatively predictable prognoses.

Although specifics may vary according to the nature of a person's disease and his or her personal circumstances, care for dying people and those close to them has several broad dimensions: physical, psychological, spiritual, and practical. Each of these dimensions is intertwined in the key processes of care, which include determining and communicating diagnosis and prognosis, establishing goals and plans, and fitting palliative and other care to these goals. The way care is organized, financed, monitored, and regulated affects how these processes are carried out in different settings for different kinds of patients.

The twenty-first century will bring new realities as well as continuing problems and opportunities in care at the end of life. It will undoubtedly deliver improvements in what medical science can do to prevent and relieve distress for those approaching death, but demographic, economic, and other trends will strain systems that already find it difficult to deliver what clinical knowledge currently allows—and what compassion should grant.

The committee focused primarily on trends and expectations relevant to care for dying patients during the next 10 to 20 years. One of these expectations is that policymakers and others will need to prepare during this period for the final demographic consequences of the post-World War II baby boom. The oldest members of the baby boom generation will reach age 65 in the year 2011, and the youngest members will do so nearly 20

years later. Barring dramatic unexpected developments, older adults will constitute a larger proportion of the population than today, and the absolute numbers of dying patients will be much larger. In the face of an ever-increasing population with chronic conditions, the current system, with its emphasis on acute curative care, will fail to provide needed long-term chronic care and palliative and support services. Although health care and social service providers have a long lead time compared with the educators and communities who had to scramble to provide schooling for the baby boom generation, the difficulties that policymakers are having with Social Security and Medicare do not bode well for the nation's ability to cope with an aging population.

In addition, continuing increases in longevity will mean that the proportion of those dying past age 75 will increase. The impact on the health care system and society on larger numbers of people dying in older old age will depend in part on their health status in the years before death. The "compression of morbidity hypothesis," for which the evidence is ambiguous, posits that an increase in healthier life styles means that people will experience disabling conditions for a smaller proportion of the years before death than today. Even if this does occur, the overall impact of the larger proportion of older people and their longer life span will still pose enormous challenges for social and health care systems.

Demographic politics are likely to be complex in coming years. On the one hand, the so-called senior lobby should be strengthened by the "baby boom" cohort. The "baby boomers," throughout their childhood, youth, and early middle age, have drawn public attention to their needs and concerns. On the other hand, the burden on the smaller working-age population of supporting its elders raises the specter of a generational backlash (even though younger people could also be burdened if the social support available to their aging parents is reduced). Such a backlash could take many forms, including means-testing Social Security benefits or less sympathy for supportive services for frail elderly people, those with serious disabilities, and people who are dying.

Cultural trends add further complexity to demographic politics. Immigrants, who tend to be young and have more children than native-born Americans, have been a major source of growth in the total U.S. population (NRC, 1997). Nonhispanic Caucasians—now a majority—are a decreasing proportion of the U.S. population. Thus, the large elderly population in the first decades of the next century will be dependent on a smaller and more culturally diverse population of younger people.

As described in preceding chapters, health care in the United States is undergoing major changes. The use of hospital services has dropped significantly, and further declines are likely, particularly in those areas with continued relatively high rates of use. Hospital care will likely be less available

to dying patients, potentially including some who could benefit from such care as well as many who will do better with alternatives.

Despite indications that health care spending increases have moderated from years past, the pressure to cut health care costs does not appear to be abating. In particular, given the bleak financial picture for Medicare and the significant portion of spending accounted for by beneficiaries in their last year of life, these constraints may be manifested in some degree of age-based rationing. That is, older people could be denied services simply because of their age, without regard to their life expectancies, function, or expected benefit from care. Decreased access to advanced technologies intended to prolong life could be a highly visible issue, although it is relatively unimportant for the great majority of those dying at an advanced age.

If successful, increased efforts to shift Medicare beneficiaries into various forms of managed care will test these entities, whose enrollment now is overwhelmingly concentrated in younger, healthier age groups. Potential problem areas include payment, contracting, and utilization review mechanisms that limit access to clinicians and care teams experienced in palliative care, patient scheduling norms that limit time for careful clinician-patient communication, marketing strategies intended to discourage enrollment or encourage disenrollment by seriously ill people, drug formularies that exclude or restrict important medications, and bureaucratic hurdles that discourage people from seeking care or preclude them from receiving requested services. One characteristic of many managed care organizations is an emphasis on moving more responsibility for diagnosis and patient management to primary care clinicians, including nurse practitioners, nurses, and other nonphysicians. How well this will work for seriously ill and elderly patients is not yet clear. A major role for nurses and other health care professionals is, however, already well tested in hospice, social health maintenance organizations, and other settings that care for patients dying of advanced progressive diseases, particularly cancer, and for frail elderly people.

As well as focusing attention on competing ethical and policy values, this prospect of constrained resources underscores the need for more valid and reliable tools for assessing health status, measuring outcomes, and linking them to health interventions. Considerable progress is being made in this arena. In addition, improved computer-based information and decision support systems promise several benefits. At the level of the individual, they will help patients, families, and clinicians in making more informed decisions about care at the end of life. At the system or societal level, they will strengthen structures and processes of accountability involving health care providers, purchasers, patient/consumers, and public officials.

Moreover, advanced information and communications technologies may make health care more accessible for some who face geographic or

other barriers to care. Although the potential for practical, effective, and affordable "medicine at a distance" is more promised than proved, telemedicine could help bring palliative and other expertise and services to homes, nursing homes, and other places where they are not very available today (IOM, 1996e). People who have chronic and advanced illnesses but do not qualify for hospital inpatient care could benefit.

Findings and Recommendations

Although the committee found many problems, it also found much that was good and improving in care for those approaching death. It was impressed by the principles, aspirations, and practices being advanced by the field of palliative medicine and being implemented or attempted through interdisciplinary care teams in varied settings, including hospices, hospitals, nursing homes, and private homes. More effort is now being devoted to understanding differences in people's paths toward death and developing programs that are flexible enough to accommodate these differences. In addition to dedicated professionals, many volunteers contribute their time and energy to provide emotional and practical support to dying patients and those close to them. People from a variety of backgrounds have also joined together to direct the attention of policymakers and ordinary citizens to the need to remove barriers to good care created by laws, regulations, organizational practices, and lack of supportive community resources.

Care for the dying should also benefit from ongoing efforts to improve continuity of care, strengthen information systems, prevent health problems, and create accountability for the quality of care. The developing fields of outcomes measurement can make important contributions to the care of the dying by teaching us how to conceptualize and measure quality of life and well-being for those approaching death. Quality improvement strategies are helping to identify and remedy system problems that impede good care. The committee is encouraged by the growing interest in end-of-life issues as recently evidenced by the publication of books and articles for lay and professional audiences, the commitment of foundation resources to support research and education, and the organization of conferences, working groups, and other initiatives sponsored by professional societies and others.

Deficiencies in Care at the End of Life

Notwithstanding these positive features, the committee concluded that very serious problems remain. Indeed, in this committee's view, if physician and hospital performance in infection control were as poor as it is, for

example, in pain management, the ensuing national outcry would create an immediate demand for responses from clinicians, managers, and educators.

The committee identified four broad deficiencies in the current care of people with life-threatening and incurable illnesses. First , too many people suffer needlessly at the end of life both from errors of omission—when caregivers fail to provide palliative and supportive care known to be effective—and from errors of commission—when caregivers do what is known to be ineffective and even harmful. As reported in Chapter 3 , studies have repeatedly indicated that a significant proportion of dying patients and patients with advanced disease experience serious pain, despite research identifying a range of effective pharmacological and other options for relieving most pain. Other symptoms are less well studied, and more research on symptom prevalence and management is needed, but the information available to the committee suggested similar care problems. Deficiencies in the application of existing knowledge to prevent and manage pain and other distressing symptoms stem from an unfortunate mix of ignorance about effective pharmacological and other interventions, misplaced concern about opioid addiction, and inadequate attention to people's quality of life while dying. These problems are reinforced by care systems that are not structured to provide the clinical expertise, reliability, continuity, and emotional support needed by people approaching death. Cultural biases and fears about illness, disability, and death may also contribute to avoidance of dying patients and those close to them.

In perverse counterpoint to the problem of undertreatment, the aggressive use of ineffectual and intrusive interventions may prolong and disfigure the period of dying. Some of this care is knowingly accepted; some is provided counter to patients' wishes; much is probably provided and accepted with little knowledge or consideration of its probable benefits and burdens. Medical culture still tolerates and even rewards the misapplication of life-sustaining technologies while slighting the prevention and relief of suffering.

Second , legal, organizational, and economic obstacles conspire to obstruct reliably excellent care at the end of life. Despite some reforms, outdated and scientifically flawed drug-prescribing laws, regulations, and interpretations by state medical boards still frustrate and intimidate physicians who wish to relieve their patients' pain. Addiction to appropriately prescribed opioids is virtually nonexistent whereas their underprescription for pain is well documented. Organizational structures often interfere with the coordination and continuity of care and impede the further development and application of palliative care strategies in patient care, professional education, and research.

Financial incentives also discourage health care practitioners and providers from rearranging care so that it serves dying patients well. Tradi-

tional financing mechanisms—including arrangements based on discounted fees—provide incentives for the overuse of procedural services and the under-provision of the assessment, evaluation, management, and supportive services so important for people with serious chronic or progressive medical problems. Medicare hospice benefits have helped fill gaps for a small segment of dying patients, but many more have conditions that do not readily fit the current hospice model or requirements. Alternatives to fee-for-service financing in combination with restrictive administrative practices pose different potential hazards that are largely unstudied as they affect seriously and incurably ill people.

Third , the education and training of physicians and other health care professionals fails to provide them with the knowledge, skills, and attitudes required to care well for the dying patient. Many deficiencies in practice stem from fundamental prior failures in professional education. Despite encouraging signs of change, most clinicians-in-training experience and learn too little of the caring that helps people to live well while dying. Undergraduate, graduate, and continuing medical education do not sufficiently prepare health professionals to recognize the final phases of illnesses, construct effective strategies for care, communicate with patients and those close to them, and understand and manage their own emotional reactions to death and dying.

Fourth , current knowledge and understanding are inadequate to guide and support the consistent practice of evidence-based medicine at the end of life. In addition to existing knowledge not being well used, we still know too little about how people die; how they want to die; and how different kinds of physical, emotional, and spiritual care might better serve the dying and those close to them. Biomedical and clinical research have emphasized the development of knowledge that contributes to the prevention, detection, or cure of disease and to the prolongation of life. Research on the end stages of diseases and the physiological bases of symptoms and symptom relief has been less well supported. Epidemiological and health services research has likewise not provided a strong base for understanding the degree to which people suffer symptoms (except, perhaps, cancer pain), experience death alone rather than in the company of those who care, comprehend diagnostic and prognostic information, and achieve a dying that is reasonably consistent with their preferences, community norms, and palliative care principles. Methods development is important to define and measure outcomes other than death (including patient and family perceptions) and to monitor and improve the quality of care for those approaching death.

More generally, it seems that this nation has not yet discovered how to talk realistically but comfortably about the end of life, nor has it learned how to value the period of dying as it is now experienced by most people.

For most of human history, death came fairly quickly in childhood or at adult ages that today seem relatively young. As the twentieth century ends, most people in economically advanced countries live fairly healthy lives into older age but then experience progressive disability for some time before they die. Except what can be inferred from newspaper obituary pages, this reality is largely shunned by the news, information, and entertainment media as distasteful or uninteresting. One result is an unhelpful combination of public fear, misinformation, and oversimplification that views misery as inescapable, pain as unavoidable, and public spending as misdirected for people who are approaching death.

Recommendations and Future Directions

The committee developed seven recommendations directed at different decisionmakers and different deficiencies in care at the end of life. These recommendations and a brief explanation follow. Each applies generally to people approaching death, including those for whom death is imminent and those with serious, eventually fatal illnesses who may live for some time.

RECOMMENDATION 1: People with advanced, potentially fatal illnesses and those close to them should be able to expect and receive reliable, skillful, and supportive care . Educating people about care at the end of life is a critical responsibility of physicians, hospitals, hospices, support groups, public programs, and media. Most patients and families need information not only about diagnosis and prognosis but also about what support and what outcomes they should reasonably be able to anticipate. They should, for example, not be allowed to believe that pain is inevitable or that supportive care is incompatible with continuing efforts to diagnose and treat. They should learn—before their last few days of life—that supportive services are available from hospices and elsewhere in the community and that those involved in their care will help arrange such services. Patient and family expectations and understanding will be aided by advance care planning that considers needs and goals, identifies appropriate surrogate decisionmakers, and avoids narrow preoccupation with written directives. To these ends, health care organizations and other relevant parties should adopt policies regarding information, education, and assistance related to end-of-life decisions and services. For those who seek to build public understanding of dying as a part of life and to generate public demand for reliable and effective supportive services, one model can be found in the perspectives, spirit, and strategies that have guided efforts to promote effective prenatal care and develop mother- and family-oriented arrangements for childbirth.

RECOMMENDATION 2: Physicians, nurses, social workers, and other health professionals must commit themselves to improving care for dying patients and to using existing knowledge effectively to prevent and relieve pain and other symptoms. Most patients depend on health care professionals to prevent and manage the varying physical and psychological symptoms that accompany advanced illness. To meet their obligations to their patients, practitioners must hold themselves and their colleagues responsible for using existing knowledge and available interventions to assess, prevent, and relieve physical and emotional distress. Unrelieved pain and other symptoms are the most evident problems that practitioners can readily avoid for the great majority of patients, but problems with communication, appropriate regard for patient and family wishes, and timely referral to palliative care specialists or teams are other areas in need of improvement. When good practice is hindered by organizational, financial, or legal impediments, health professionals have the responsibility as individuals and members of larger groups to advocate for system change.

RECOMMENDATION 3: Because many deficiencies in care reflect system problems, policymakers, consumer groups, and purchasers of health care should work with health care providers and researchers to

Although individuals must act to improve care at the end of life, systems of care must be changed to support such action. System change requires the involvement of public and private purchasers of care, regulators, and others whose policies and practices may create incentives for inappropriate care and barriers to excellent care.

Better information systems and tools for measuring outcomes and evaluating care are critical to the creation of effective and accountable systems of care and to the effective functioning of both internal and external systems of quality monitoring and improvement. Reliable and valid information about quality of care should be available to patients, purchasers, and ac-

crediting organizations, but organizations also need to audit their structures and processes for problem areas and commit themselves to improving care on an ongoing basis. Problem areas include insufficient numbers and types of properly trained personnel, nonexistent or inadequate protocols for symptom assessment and management, and poor procedures for evaluating the need for patient transfers or referrals and for carrying out such transfers without harm to patients. The committee supports the development of guidelines for clinical practice that assist clinicians in preventing and relieving symptoms and in managing the end stages of specific diseases.

Policymakers and purchasers need to consider both the long-recognized deficiencies of traditional fee-for-service arrangements and the less thoroughly understood strengths and limitations of alternatives, including various kinds of capitated and per case payment methods that apply in diverse ways to individual practitioners, interdisciplinary care teams, specific institutions, networks of providers, or integrated systems of care. Particularly in need of attention are the levels of payment for home and nursing home visits by physicians, the interpretation of evaluation and management codes, the lack of diagnosis- or condition-related adjustments in hospice payments for both home and inpatient care, and other financing incentives that may discourage hospices or health plans from enrolling sicker patients. In addition, reimbursement methods and related incentives should encourage continuity of care that supports patients all the way through death and reduces disconnected and episodic care. Health care professionals and organizations also need to formulate ethical guidelines to guard against possible conflicts of interest in capitated and other care systems.

The problems with laws relating to prescribing practices are twofold. One problem is outdated, scientifically flawed laws and regulations themselves. The other problem is clinician, regulator, and public misunderstanding of the appropriate use of opioids. State medical societies, licensing boards, legislative committees, and other groups should cooperate to review state laws, regulations, board practices, and physician attitudes and practices to identify problem areas and then devise revisions in those statutes and regulations that unduly burden clinical management of pain. Regulatory review and revision should be accompanied by educational efforts to increase scientifically and clinically based knowledge and correct misperceptions about the appropriate medical use of opioids and about the biological mechanisms of opioid dependence, addiction, and pain management. Legal change should help—but cannot be relied upon alone—to correct undertreatment.

RECOMMENDATION 4: Educators and other health professionals should initiate changes in undergraduate, graduate, and continuing education to ensure that practitioners have the relevant attitudes, knowledge, and

skills to care well for dying patients. Dying is too important a part of life to be left to one or two required (but poorly attended) lectures, to be considered only in ethical and not clinical terms, or to be set aside on the grounds that medical educators are already swamped with competing demands for time and resources. Every health professional who deals directly with patients and families needs a basic grounding in competent and compassionate care for seriously ill and dying patients. For clinicians and others to be held truly accountable for their care of the dying, educators must be held accountable for what they teach and what they implicitly and explicitly honor as exemplary practice. Textbooks and other materials likewise need revision to reflect the reality that people die and that dying patients are not people for whom "nothing can be done." As described in Chapter 8 , a number of promising curriculum models exist, and others are being developed and tested.

RECOMMENDATION 5: Palliative care should become, if not a medical specially, at least a defined area of expertise, education, and research. The objective is to create a cadre of palliative care experts whose numbers and talents are sufficient to (a) provide expert consultation and role models for colleagues, students, and other members of the health care team; (b) supply educational leadership and resources for scientifically based and practically useful undergraduate, graduate, and continuing medical education; and (c) organize and conduct biomedical, clinical, behavioral, and health services research. More generally, palliative care must be redefined to include prevention as well as relief of symptoms. Attention to symptoms should begin at earlier points during the trajectory of an illness because early treatment may well contribute to lessening pain at the end of life. The model for palliative care stresses interdisciplinary, comprehensive, and continuing care of patients and those close to them.

RECOMMENDATION 6: The nation's research establishment should define and implement priorities for strengthening the knowledge base for end-of-life care. The research establishment includes the National Institutes of Health, other federal agencies (e.g., the Agency for Health Care Policy and Research, the Health Care Financing Administration, the National Center for Health Statistics), academic centers, researchers in many disciplines, pharmaceutical companies, and foundations supporting health research. Their active support and involvement is necessary to advance basic and clinical research on the physiological mechanisms and treatment of symptoms common during the end of life, including neuropsychiatric problems. To extend understanding of quality-of-life issues in the treatment of advanced disease, those supporting clinical trials should encourage the collection of more information on the quality of life of those who die while

enrolled in such trials. A further step is to support more research on the physiological mechanisms and treatment of symptoms common during the end of life, including neuropsychiatric problems. Pain research appears to supply a good model for this enterprise to follow. In addition, pathways need to be developed to further the dissemination and replication of proven health care interventions and programs. Demonstration projects to test new methods of financing and organizing care should be a priority for the Health Care Financing Administration. To encourage change in the attitudes and understandings of the research establishment, the committee urges the National Institutes of Health and other public agencies to take the lead in organizing a series of workshops, consensus conferences, and agenda-setting projects that focus on what is and is not known about end stage disease and symptom prevention and treatment and that propose an agenda for further research. For the Agency for Health Care Policy and Research, the committee encourages support for the dissemination and replication of proven health care interventions and programs through clinical practice guidelines and other means.

RECOMMENDATION 7: A continuing public discussion is essential to develop a better understanding of the modern experience of dying, the options available to dying patients and families, and the obligations of communities to those approaching death. Individual conversations between practitioners and patients are important but cannot by themselves provide the supportive environment for the attitudes and actions that make it possible for most people to die free from avoidable distress and to find the peace or meaning that is significant to them. Although efforts to reduce the entertainment and news media's emphasis on violent or sensational death and unrealistic medical rescue have not been notably successful, a modicum of balance has recently been provided by thoughtful analyses; public forums; and other coverage of the clinical, emotional, and practical issues involved in end-of-life care. Regardless of how the current, highly publicized policy debate over physician-assisted suicide is resolved, the goal of improving care for those approaching death and overcoming the barriers to achieving that goal should not be allowed to fade from public consciousness. Much of the responsibility for keeping the public discussion going will rest not with the media but with public officials, professional organizations, religious leaders, and community groups.

Finally, the committee agreed that it was not prepared to take a position on the legality or morality of physician-assisted suicide. The issue should not, in any case, take precedence over those reforms to the health care system that would improve care for all dying patients. The goal of those who favor legalizing physician-assisted suicide is to promote patient autonomy, but true autonomy is not possible when significant numbers of

people have the limited choice between suicide or continued suffering. If the laws permitting physician-assisted suicide are implemented at the state level, careful monitoring of their consequences for the quality of care and the public's trust in health care will be very important.

Concluding Thoughts

Improving care at the end of life will require many changes in attitudes, policies, and actions. Such changes will involve a multitude of people and institutions that have a role in making and implementing decisions about patient care or in structuring the environments in which such decisions are reached and realized. Clearly, what patients and their families know, expect, and desire is important. Health care professionals play critical roles in diagnosis, communication, guidance and direction, treatment, negotiation, and advocacy for patients at many levels. Decisions by health plan managers, institutional administrators, and governmental officials shape and often impede the ability of patients, families, and clinicians to construct a care plan that serves the dying person well.

In general, changes in systems of care—not just individual beliefs and actions—are necessary if real gains are to be made in helping people live well despite fatal illness. Such widespread changes depend in part on a stronger social consensus on what constitutes appropriate and supportive care for those approaching death. Widely publicized—albeit not necessarily typical—instances of patient and family powerlessness to stop what they see as futile and painful treatments reflect a lack of such consensus. Paradoxically, this lack of consensus also is evident when patients or families demand treatments that practitioners see as useless, counterproductive, or even inhumane. It similarly reveals itself in a health care delivery and financing system that still rewards life-prolonging interventions (even when they will be ineffectual) and slights palliative and supportive services for those for whom life-extending treatment is neither helpful nor desired.

Freud may have been right that "our unconscious does not believe in its own death; it behaves as if immortal" (Freud, 1915, in Freud, 1959, p. 304). The committee was optimistic, nonetheless, that this society would cultivate the conscious intelligence and spirit to recognize the reality of death and the likelihood that it will bring distress. It likewise was optimistic that people would work together to create humane systems of care that assure the consistent use of existing knowledge to prevent and relieve suffering and that support efforts to provide people the right care at the right time in the right way. The analyses, conclusions, and recommendations presented here are offered with optimism that we can, individually and together, "approach" death constructively and create humane care systems that people can trust to serve them well as they die.

When the end of life makes its inevitable appearance, people should be able to expect reliable, humane, and effective caregiving. Yet too many dying people suffer unnecessarily. While an "overtreated" dying is feared, untreated pain or emotional abandonment are equally frightening.

Approaching Death reflects a wide-ranging effort to understand what we know about care at the end of life, what we have yet to learn, and what we know but do not adequately apply. It seeks to build understanding of what constitutes good care for the dying and offers recommendations to decisionmakers that address specific barriers to achieving good care.

This volume offers a profile of when, where, and how Americans die. It examines the dimensions of caring at the end of life:

• Determining diagnosis and prognosis and communicating these to patient and family.
• Establishing clinical and personal goals.
• Matching physical, psychological, spiritual, and practical care strategies to the patient's values and circumstances.

Approaching Death considers the dying experience in hospitals, nursing homes, and other settings and the role of interdisciplinary teams and managed care. It offers perspectives on quality measurement and improvement, the role of practice guidelines, cost concerns, and legal issues such as assisted suicide. The book proposes how health professionals can become better prepared to care well for those who are dying and to understand that these are not patients for whom "nothing can be done."

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Making End-of-Life Decisions

Readers discuss unwanted medical care and choosing to die.

To the Editor:

Re “ Doctors Saved Her Life, Even Over Her Wishes ” (front page, Aug. 28):

I read with great interest your story about when doctors don’t follow “do not resuscitate” orders. As a practicing anesthesiologist, I have been surprised by how often surgeons, operating room nurses and anesthesiologists refer to the “automatic suspension” of D.N.R. orders during a patient’s surgery or procedure. Such a practice is a violation of a patient’s fundamental right of autonomy and self-determination.

For these reasons the American Society of Anesthesiologists, the American College of Surgeons and the Association of periOperative Registered Nurses have stated since the 1990s that it’s unethical to automatically suspend D.N.R. orders in the operating room. Yet, 30 years later, I still hear this.

It is correct that some surgeries cannot be performed without a breathing tube. And treatable conditions often arise in the operating room, such as bleeding, allergic reactions or decreases in blood pressure. However, it is still entirely appropriate for patients to request that some things be off limits. Examples might include chest compressions, electrical shocks or drugs to maintain their blood pressure.

In the consent process, doctors can advise patients whether their surgery can be completed within the boundaries of what a patient is willing to consent to.

Samuel C. Seiden Granite Bay, Calif.

This informative and discouraging article touches on a continuing health care crisis: an excess of unwanted medical care, particularly at life’s end. The expressed wishes of patients are too often inappropriately ignored. This must change.

A survey 10 years ago revealed that about one in four Americans ages 50 and over say that they or a family member experienced excessive or unwanted medical treatment. That is about 25 million people. Nearly two-thirds of those surveyed supported withholding payments to health care providers who do not honor their end-of-life wishes.

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Better care at the end of life: we need to change the conversation

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• Charlotte Augst , freelance consultant

Far too many people are being denied their right to autonomous decision making at the end of their lives. This stubborn reality seems hard to shift, despite years of guidance supporting professionals to elicit and respect people’s wishes, and despite the best efforts of educators and campaigners to encourage better conversations about death and dying.

This is evidenced by the thousands of phone calls and emails that the charity Compassion in Dying has received in recent years. The charity analysed these responses to better understand what gets in the way of doctors, nurses, or care home managers from following the wishes of a dying person.

The report published recently makes for difficult reading. 1 It finds that people do not understand that they need to write down their wishes for their end-of-life care in order to ensure these are followed. Relatives report that their loved ones were subjected to invasive treatments that they had explicitly said no to. People are being actively discouraged by their doctors from having a conversation about their preferences at the end of life.

As a small organisation tackling a truly knotty problem this leaves them with a difficult question to answer: how do you affect the change you work towards?

For years there has existed guidance about doctors needing to ensure their patients fully understand the implications of interventions at the end of life. For this, dying people obviously need to understand that they are terminally ill, the likely trajectory of their illness, their treatment and care options, and what decision maximises their chances of maintaining good quality of life for as long as possible—if that is their priority.

Health and voluntary sector organisations have run various “let’s talk about dying” weeks and charity initiatives. People have used complaints processes and Patient Advice and Liaison Service (PALS) services to try to be heard. But still, far too many people experience a denial of their right to a conversation, to be heard, and for their wishes to be followed through on. The consequence of this is concerning. Polling 2 shows that one in four people say the last close friend or family member they know who died received medical treatment their loved one would not have wanted.

Charities who work towards change (and obviously all charities should) have some choices to make. Firstly, they could decide that their services alone are the answer. This idea is unrealistic for all small charities, but even large ones cannot reliably provide services to patients and families at the scale that is required for near universal coverage. The solution for charities to achieve change can’t ever really be “just services.” It has to be a service, plus influence, leverage, insight, and advocacy.

But influencing the super tanker that is the health and social care system (and sadly the report shows that it is also the care system which sometimes denies people their right to autonomous decision making about the end of their lives) is by no means a trivial challenge. How do you tackle “systems change” at the required level, where everything from medical education, to training of care workers, to inspection frameworks, and obligations placed on individual clinicians has to change?

There seem to be two schools of thought. One of these views the system essentially as a machine, where if you pull the right lever, different outcomes appear. It seems to me—and to Compassion in Dying—that this theory of change has been tried and tested to destruction, and it doesn’t deliver. The health and social care systems are too complex, there are too many decision makers in the process, and everyone from a care assistant to a consultant can scupper your efforts if you rely solely on mechanistic tools for change.

The other approach foregrounds “culture.” It acknowledges that system change is complex, and that you need to tackle the beliefs and assumptions of the workforce and of users to affect change. Is it fair to say that far too often this approach remains entirely aspirational? It suggests that if only we talk enough about change, about “flipping the culture,” and about “transformation” then it will somehow magically happen. Maybe some of the wider sector activity around death and dying falls a bit into this trap too—being too easily satisfied with having had some good conversations about dying, but not making sure people have actually documented their wishes in ways that clinical teams are then compelled to enact.

Compassion in Dying adopts an approach that rightly recognises we need both. Yes, we need to change the conversation. But we also need to re-examine how end-of-life decisions are made and communicated. So, we need to improve education and training, how we enable people to record their wishes, and introduce a duty of candour for someone reaching the end of their lives. Taking the General Medical Council’s Good Medical Practice guidance as a blueprint, this would include a duty to provide clear, jargon-free information to a person about their condition, likely progression and prognosis, their options for treatment (including declining it) and the benefits and risks for each. This will help instil a greater culture of openness and transparency in end-of-life conversations, so that people can fully weigh up treatment decisions and provide properly informed consent or refusal.

But we also need to enable people to see that they can—and should—tell their families what they do and don’t want and record this, and that clinical staff need to feel safe and confident to know when to transition from active treatment to comfort care only.

This change can’t be led just by “the State,” or just by “society.” Because the organisation paying for care, and regulating and inspecting it, is probably not the right one to lead a hearts and minds communications campaign on changing the conversation about death and dying. And the organisation supporting professionals in how to engage in better conversations can’t be the one that then inspects them. We need partnerships that enable all the different actors to lean into their assets and strengths, and to coalesce around a shared mission of autonomy for people at the end of their lives. The new Labour government’s commitment to giving power to patients is refreshing, but as encouraging as these noises are, we need cross-sector and multi-level collaboration to ensure it becomes reality for people at the end of their lives. 3

Competing interests: Charlotte Augst is a freelance consultant, mostly working with voluntary and community organisations. She has helped Compassion in Dying develop their policy response to the issues raised by the many callers to their helpline services. She has no other conflicts to declare.

• ↵ Compassion in dying. Rethinking the UK’s approach to dying. https://compassionindying.org.uk/resource/rethinking-uk-approach-dying/
• ↵ Compassion in dying. End of Life Care. https://ygo-assets-websites-editorial-emea.yougov.net/documents/CompassionInDying_EndOfLifeCare_240304_W.pdf

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5 moving, beautiful essays about death and dying

by Sarah Kliff

It is never easy to contemplate the end-of-life, whether its own our experience or that of a loved one.

This has made a recent swath of beautiful essays a surprise. In different publications over the past few weeks, I’ve stumbled upon writers who were contemplating final days. These are, no doubt, hard stories to read. I had to take breaks as I read about Paul Kalanithi’s experience facing metastatic lung cancer while parenting a toddler, and was devastated as I followed Liz Lopatto’s contemplations on how to give her ailing cat the best death possible. But I also learned so much from reading these essays, too, about what it means to have a good death versus a difficult end from those forced to grapple with the issue. These are four stories that have stood out to me recently, alongside one essay from a few years ago that sticks with me today.

My Own Life | Oliver Sacks

As recently as last month, popular author and neurologist Oliver Sacks was in great health, even swimming a mile every day. Then, everything changed: the 81-year-old was diagnosed with terminal liver cancer. In a beautiful op-ed , published in late February in the New York Times, he describes his state of mind and how he’ll face his final moments. What I liked about this essay is how Sacks describes how his world view shifts as he sees his time on earth getting shorter, and how he thinks about the value of his time.

Before I go | Paul Kalanithi

Kalanthi began noticing symptoms — “weight loss, fevers, night sweats, unremitting back pain, cough” — during his sixth year of residency as a neurologist at Stanford. A CT scan revealed metastatic lung cancer. Kalanthi writes about his daughter, Cady and how he “probably won’t live long enough for her to have a memory of me.” Much of his essay focuses on an interesting discussion of time, how it’s become a double-edged sword. Each day, he sees his daughter grow older, a joy. But every day is also one that brings him closer to his likely death from cancer.

As I lay dying | Laurie Becklund

Becklund’s essay was published posthumonously after her death on February 8 of this year. One of the unique issues she grapples with is how to discuss her terminal diagnosis with others and the challenge of not becoming defined by a disease. “Who would ever sign another book contract with a dying woman?” she writes. “Or remember Laurie Becklund, valedictorian, Fulbright scholar, former Times staff writer who exposed the Salvadoran death squads and helped The Times win a Pulitzer Prize for coverage of the 1992 L.A. riots? More important, and more honest, who would ever again look at me just as Laurie?”

Everything I know about a good death I learned from my cat | Liz Lopatto

Dorothy Parker was Lopatto’s cat, a stray adopted from a local vet. And Dorothy Parker, known mostly as Dottie, died peacefully when she passed away earlier this month. Lopatto’s essay is, in part, about what she learned about end-of-life care for humans from her cat. But perhaps more than that, it’s also about the limitations of how much her experience caring for a pet can transfer to caring for another person.

Yes, Lopatto’s essay is about a cat rather than a human being. No, it does not make it any easier to read. She describes in searing detail about the experience of caring for another being at the end of life. “Dottie used to weigh almost 20 pounds; she now weighs six,” Lopatto writes. “My vet is right about Dottie being close to death, that it’s probably a matter of weeks rather than months.”

Letting Go | Atul Gawande

“Letting Go” is a beautiful, difficult true story of death. You know from the very first sentence — “Sara Thomas Monopoli was pregnant with her first child when her doctors learned that she was going to die” — that it is going to be tragic. This story has long been one of my favorite pieces of health care journalism because it grapples so starkly with the difficult realities of end-of-life care.

In the story, Monopoli is diagnosed with stage four lung cancer, a surprise for a non-smoking young woman. It’s a devastating death sentence: doctors know that lung cancer that advanced is terminal. Gawande knew this too — Monpoli was his patient. But actually discussing this fact with a young patient with a newborn baby seemed impossible.

"Having any sort of discussion where you begin to say, 'look you probably only have a few months to live. How do we make the best of that time without giving up on the options that you have?' That was a conversation I wasn't ready to have," Gawande recounts of the case in a new Frontline documentary .

What’s tragic about Monopoli’s case was, of course, her death at an early age, in her 30s. But the tragedy that Gawande hones in on — the type of tragedy we talk about much less — is how terribly Monopoli’s last days played out.

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End-Of-Life Care

Introduction.

The nurse should provide a holistic environment of care and compassionate by listening to the sensitive needs of the patient and recognizing them then catering to the patient preferences in the best way possible (Finucane et al.,2013). Offering compassion and support to the patient will require talking to the family members and those close to the patient about the patient preferences so that they can be realized. Highest standard of care should be provided and the nurse should be mindful of the patient body language when they want to communicate and when they want time alone.

1. Dobbins, E. H. (2016). Improving end-of-life care: Recommendations from the IOM. The Nurse Practitioner, 41(9), 26-34.

2. Finucane, A. M., Stevenson, B., Moyes, R., Oxenham, D., & Murray, S. A. (2013). Improving end-of-life care in nursing homes: Implementation and evaluation of an intervention to sustain quality of care. Palliative medicine, 27(8), 772-778.

3. Gilstrap, C. M., & White, Z. M. (2015). Interactional communication challenges in end-of-life care: dialectical tensions and management strategies experienced by home hospice nurses. Health communication, 30(6), 525-535.

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When a loved one is dying, conversations about the end of life may be uncomfortable and hard. Still, talking about end-of-life care is important.

Depending on the circumstances, you might be able to help your loved one make important end-of-life decisions. Those decisions may include whether to remain at home, move to a nursing home or other facility, or seek hospice care. Work with the health care team to make sure that your loved one remains comfortable at the end of life. Pain, breathing problems, anxiety and other end-of-life symptoms often can be eased.

Think about end-of-life issues that go beyond medical care too. Decide how best to communicate with and provide updates to other family members and friends. If possible, talk to your loved one about their preferences for a funeral or other memorial service. Find out if your loved one has a will or other legal documents that will be needed after death.

Even at the end of life, you can continue to support and nurture your relationship with your loved one. Simply being there can be an important source of strength and comfort for all involved.

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• Providing care and comfort at the end of life. National Institute on Aging. https://www.nia.nih.gov/health/providing-comfort-end-life. Accessed April 4, 2023.
• Perng A, et al. Identifying and treating complicated grief in older adults. The Journal for Nurse Practitioners. 2018; doi:10.1016/j.nurpra.2017.12.001.
• What is hospice care? American Cancer Society. https://www.cancer.org/treatment/end-of-life-care/hospice-care/what-is-hospice-care.html. Accessed April 4, 2023.
• Advance care planning: Advance directives for health care. National Institute on Aging. https://www.nia.nih.gov/health/advance-care-planning-advance-directives-health-care. Accessed April 4, 2023.
• Ross V, et al. Exploring the support needs of people bereaved by suicide: A qualitative study. Journal of Death and Dying. 2021; doi:10.1177/0030222819825775.
• Making decisions for someone at the end of life. National Institute on Aging. https://www.nia.nih.gov/health/making-decisions-someone-end-life. Accessed April 10, 2023.
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Nursing Care at the End of Life Essay

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The video podcast “Nursing Care at End of Life” emphasizes the complexity of the nursing profession. In their practice, nurses do not only conduct medical procedures but also interact with individuals with varying needs. Probably, one of the situations when a nurse should approach a patient and their family with caution, consideration, and utmost respect, is when a patient is dying.

When assisting a dying patient in palliative or hospice care, a nurse assumes many roles. He or she assesses an individual’s physiological and psychological symptoms, transmits information to everyone involved, and acts as a mediator between family members. I am convinced that it is paramount to holistic nursing practice to fulfill all the assigned duties with regards to medical ethical principles.

After watching the video, I came to thinking that palliative or hospice nursing care should primarily correspond to the principles of autonomy, beneficence, and nonmaleficence. Even in the last months or days of their life, a patient should retain their dignity and freedom of choice as to who is allowed to visit them, how the hospital space is arranged, and so on (Podcast Library, 2015). Furthermore, a nurse should help a patient practice their autonomy in determining how they would like to fulfill their spiritual needs at the end of life.

Lastly, the principles of beneficence and nonmaleficence correspond to a nurse’s duty to relieve and prevent pain respectively. As a patient approaches the end of life, their bodily functions decline, and certain discomfort is unavoidable. However, together with a team of medical practitioners, a nurse may elaborate a treatment plan that would assuage painful sensations. Moreover, in the case of a terminal illness, modern medical advancements allow to act on the principle of nonmaleficence and help a patient avoid unnecessary suffering.

Dying is a natural process which, unfortunately, often involves much pain and psychological distress in a patient as well as in the members of his or her family. Nevertheless, it is possible to respond to acute health issues through an adequate assessment of the symptoms and appropriate treatment. Ongoing support from a nurse as well as from friends and family members may also make a significant difference for a dying patient and improve their quality of life.

Podcast Library. (2015). Nursing care at end of life [Video file]. Web.

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IvyPanda. (2021, July 18). Nursing Care at the End of Life. https://ivypanda.com/essays/nursing-care-at-the-end-of-life/

"Nursing Care at the End of Life." IvyPanda , 18 July 2021, ivypanda.com/essays/nursing-care-at-the-end-of-life/.

IvyPanda . (2021) 'Nursing Care at the End of Life'. 18 July.

IvyPanda . 2021. "Nursing Care at the End of Life." July 18, 2021. https://ivypanda.com/essays/nursing-care-at-the-end-of-life/.

1. IvyPanda . "Nursing Care at the End of Life." July 18, 2021. https://ivypanda.com/essays/nursing-care-at-the-end-of-life/.

Bibliography

IvyPanda . "Nursing Care at the End of Life." July 18, 2021. https://ivypanda.com/essays/nursing-care-at-the-end-of-life/.

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How to Start a Conversation About End-of-Life Care

Planning for your final days is hard, but it's an invaluable gift to caregivers and loved ones.

Amy Goyer & Andy Markowitz,

In this story

Why talk • Prepare • Conversation prompt • Issues to discuss • Logistics • After the talk • Next steps • More resources

Dying is a universal experience . Nearly everyone has a story about a good death or a hard death among those they love. The difference between these experiences may rest on whether we have shared our wishes for how we want to spend our final days.

How we want to die is the most important conversation Americans aren't having. While 85 percent of adults over 45 say they are comfortable discussing death and dying, 7 in 10 say the topic is generally avoided, according to AARP’s 2024  End of Life Survey : Thoughts and Attitudes on Death and Dying.

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Planning your final days is never easy, but it's an invaluable gift to your loved ones. Studies show that when there is a meaningful conversation about end-of-life choices, survivors report feeling less guilt and less depression and having an easier process of grieving. These discussions can be among the richest and most intimate that friends and family share.

Preparing for the conversation

Thinking through these issues before a medical crisis — in the kitchen rather than the intensive care unit — will help you and your loved ones make decisions based on what you value most, without stress and fear.

1. What do I need to think about or do before I have this conversation?

2. What concerns do I want to talk about?   Are there any topics important to you to settle? (Examples might be getting  finances in order , or making sure a particular family member  is taken care of .)

Consider having a practice conversation with a trusted friend, or write a letter to a loved one (or even to yourself).

And remember that the conversation might reveal disagreements. That's OK. You'll want to discuss those issues now, not during a medical crisis.

How to start the conversation

Conversation prompt: Finish this sentence, or ask your aging loved one to do it. “What matters to me at the end of life is …”

An example might be “that I am comfortable and at home,” or “that no one has to disrupt their whole life to care for me,” or “that my kids all work together in making decisions.” It might be, “if doctors recommend  palliative care , no one pushes for more treatment.”

Sharing a “what matters to me” statement with your family can help them communicate to your doctors what abilities are most important to you and what treatments are, and aren't, worth pursuing.

It can also give your loved ones reassurance that you understand their wishes.

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Issues to address

This list is a starting point; there may be other issues to think and talk about. Your health care team may be able to suggest additional questions.

Keep in mind that you don't have to steer the conversation — just let it happen. You don't have to cover everyone and everything right off the bat. Be patient and give others time to think about what's being said.

If there are disagreements, try not to judge: A “ good death ” means different things to different people.

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And remember, as circumstances change, you and your loved ones can revisit issues.

• What do you want the last phase of your life to be like?
• Are there important milestones you'd like to be there for (the birth of a grandchild, your 80th birthday)?
• How do you want to handle medical decisions? As a patient, how much do you want to know about your condition? If you have a terminal illness, do you want to know how quickly it is progressing?
• How much information do you want doctors to share with your loved ones?
• Do you want to be actively involved in care decisions?
• If you prefer to have a  loved one make decision , who do you want involved in those decision?  Which family member  will be the primary decision maker?
• What do you want your medical care to look like? Are there treatments you would want (or not want), such as a feeding tube or resuscitation if your heart stops?
• Do you want to continue treatment, no matter how uncomfortable it gets, or is quality of life more important than quantity?
• Is there a point you think you might want to move from curing an illness to comfort care alone?
• Do you want to spend your last days at home, or are you OK being in a  hospice , hospital or nursing facility?
• When the time comes, who would you like  to be with you ?

Additional topics to raise now or at a later date:

Are there financial affairs you want to get in order?

Are there family tensions you're concerned about?

Breaking the ice

Here are some ways the Conversation Project suggests starting a talk about end-of-life care.

 “I need your help with something.”

 “I need to think about the future. Will you help me?"

 “I was thinking about what happened to __________, and it made me realize …”

 “Even though I'm OK right now, I'm worried that ________, and I want to be prepared.”

 “Remember how ________ died? Was that a ‘good’ death or ‘hard’ death? How will yours be different?”

Setting up for the talk

Once you feel ready to share your end-of-life wishes, or to solicit them from a loved one, think about the basics: who, what, where and when.

Who should I invite?  The list could include not just particular family members but also friends, doctors, caregivers, members of the clergy or others.

When should we talk?  Do you want to broach the subject at a family gathering — around the holidays, for example? Ahead of major life events like the birth of a child or grandchild, or a kid leaving for college? At the first sign of a significant health problem?

Where should we talk?  Around the kitchen table? At a favorite restaurant or park? On a hike or at your place of worship? Choose a setting you think will be conducive to an intimate, open conversation.

After you’ve talked

Congratulate yourself! You've broken the barrier. This initial conversation will hopefully be the first of many. Think about how it went, and how you'd like future talks to go. For example:

How did it make you feel? What do you want to remember about it?

What do you want your loved ones to remember about it?

Is there anything you need to clarify? Something you think was misinterpreted or misunderstood?

What do you want to make sure to talk about, or ask about, next time?

Another important follow-up to the conversation is putting what you talked about in writing, in legal documents that will ensure those wishes are respected when the time comes.

Create a  power of attorney for health care  in which you appoint an agent (commonly called a health care proxy) to make medical decisions for you, based on your expressed wishes, if you can no longer speak for yourself.

Create an  advance directive  that lays out your wishes regarding end-of-life medical care, including what kinds of treatment you do or don't want.

More resources

The  Conversation Project  has a downloadable guide developed to give people a jumping-off point for this all-important talk and to help them keep it going over time.

Editor's note: This story has been updated with new information.

Amy Goyer  is AARP's family and caregiving expert and author of  Juggling Life, Work and Caregiving . Connect with Amy on  Facebook , X (formerly Twitter ) , in  AARP's Online Community  and in the  AARP Facebook Family Caregivers Group .

Andy Markowitz covers Social Security and retirement for AARP. He is a former editor of the  Prague Post  and  Baltimore City Paper .

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Confronting Death Paperback – September 7, 2024

• Print length 426 pages
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• Publisher ‏ : ‎ Chiron Publications (September 7, 2024)
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Getting Your Affairs in Order Checklist: Documents to Prepare for the Future

On this page:

Checklist for getting your affairs in order

Which documents do you need to have in place, who can help with getting your affairs in order, what other decisions can you prepare for in advance.

No one ever plans to be sick or disabled. Yet, planning for the future can make all the difference in an emergency and at the end-of-life. Being prepared and having important documents in a single place can give you peace of mind, help ensure your wishes are honored, and ease the burden on your loved ones.

This list provides common steps to consider when getting your affairs in order.

1. Plan for your estate and finances. Depending on your situation, you may choose to prepare different types of legal documents to outline how your estate and finances will be handled in the future. Common documents include a will, durable power of attorney for finances, and a living trust.

• A will specifies how your estate — your property, money, and other assets — will be distributed and managed when you die. A will can also address care for children under age 18, adult dependents, and pets, as well as gifts and end-of-life arrangements, such as a funeral or memorial service and burial or cremation. If you do not have a will, your estate will be distributed according to the laws in your state.
• A durable power of attorney for finances names someone who will make financial decisions for you when you are unable to.
• A living trust names and instructs a person, called the trustee, to hold and distribute property and funds on your behalf when you are no longer able to manage your affairs.

2. Plan for your future health care. Many people choose to prepare advance directives, which are legal documents that provide instructions for medical care and only go into effect if you cannot communicate your own wishes due to disease or severe injury. The most common advance directives include a living will and a durable power of attorney for health care.

• A living will tells doctors how you want to be treated if you cannot make your own decisions about emergency treatment. You can say which common medical treatments or care you would want, which ones you would want to avoid, and under which conditions each of your choices applies. Learn how to prepare a living will .
• A durable power of attorney for health care names your health care proxy, a person who can make health care decisions for you if you are unable to communicate these yourself. Your proxy — also known as a representative, surrogate, or agent — should be familiar with your values and wishes. A proxy can be chosen in addition to or instead of a living will. Having a health care proxy helps you plan for situations that cannot be foreseen, such as a serious auto accident or stroke. Learn how to choose a health care proxy .

These documents are part of advance care planning , which involves preparing for future decisions about your medical care and discussing your wishes with your loved ones.

3. Put your important papers and copies of legal documents in one place. You can set up a file, put everything in a desk or dresser drawer, or list the information and location of papers in a notebook. For added security, you might consider getting a fireproof and waterproof safe to store your documents. If your papers are in a bank safe deposit box, keep copies in a file at home. View a list of important papers .

4. Tell someone you know and trust or a lawyer where to find your important papers. You don’t need to discuss your personal affairs, but someone you trust should know where to find your papers in case of an emergency. If you don't have a relative or friend you trust, ask a lawyer to help.

5. Talk to your loved ones and a doctor about advance care planning. A doctor can help you understand future health decisions you may face and plan the kinds of care or treatment you may want. Discussing advance care planning with your doctor is free through Medicare during your annual wellness visit. Private health insurance may also cover these discussions. Share your decisions with your loved ones to help avoid any surprises or misunderstandings about your wishes.

6. Give permission in advance for a doctor or lawyer to talk with your caregiver as needed. If you need help managing your care, you can give your caregiver permission to talk with your doctors, your lawyer, your insurance provider, a credit card company, or your bank. You may need to sign and return a form. Giving permission for your doctor or lawyer to talk with your caregiver is different from naming a health care proxy. A health care proxy can only make decisions if you are unable to communicate them yourself.

7. Review your plans regularly. It’s important to review your plans at least once each year and when any major life event occurs, like a divorce, move, or major change in your health.

Advance Care Planning: A Conversation Guide

Want to learn more about advance care planning? NIA's guide offers conversation tips, worksheets, and more.

Personal information

• Full legal name
• Social Security number
• Legal residence
• Date and place of birth
• Names and addresses of spouse and children
• Location of birth and death certificates and certificates of marriage, divorce, citizenship, and adoption
• Employers and dates of employment
• Education and military records
• Names and phone numbers of religious contacts
• Memberships in groups and awards received
• Names and phone numbers of close friends, relatives, doctors, lawyers, and financial advisors

Financial information

• Sources of income and assets (pension from your employer, IRAs, 401(k)s, interest, etc.)
• Social Security information
• Insurance information (life, long-term care, home, car) with policy numbers and agents' names and phone numbers
• Names of your banks and account numbers (checking, savings, credit union)
• Investment income (stocks, bonds, property) and stockbrokers' names and phone numbers
• Copy of most recent income tax return
• Location of most up-to-date will with an original signature
• Liabilities, including property tax — what is owed, to whom, and when payments are due
• Mortgages and debts — how and when they are paid
• Location of original deed of trust for home
• Car title and registration
• Credit and debit card names and numbers
• Location of safe deposit box and key

Health information

• Current prescriptions (be sure to update this regularly)
• Living will
• Durable power of attorney for health care
• Copies of any medical orders or forms you have (for example, a do-not-resuscitate order)
• Health insurance information with policy and phone numbers

You may want to talk with a lawyer about setting up a general power of attorney, durable power of attorney, joint account, or trust. Be sure to ask about the lawyer's fees before you make an appointment.

You do not have to involve a lawyer in creating your advance directives for health care. Most states provide the forms for free, and you can complete them yourself. Learn more about completing an advance directive .

You should be able to find a directory of local lawyers on the internet or contact your local library, your local bar association for lawyers, or the Eldercare Locator. Your local bar association can also help you find what free legal aid options your state has to offer. An informed family member may be able to help you manage some of these issues.

Getting your affairs in order can also mean making decisions about organ donation and funeral arrangements, or what you want to happen to your body after you die. Deciding and sharing your decisions can help your loved ones during a stressful time and best ensure your wishes are understood and respected.

Organ donation and brain donation. When someone dies, their healthy organs and tissues may be donated to help someone else. You can register to be an organ donor when you renew your driver’s license or state ID at your local department of motor vehicles. You can also register online. Some people also choose to donate their brain to advance scientific research. It may be possible to donate organs for transplant as well as the brain for scientific research. Learn more about organ donation and brain donation .

Funeral arrangements. You can decide ahead of time what kind of funeral or memorial service you would like and where it will be held. You can also decide whether you would like to be buried or cremated and whether you want your body’s ashes kept by loved ones or scattered in a favorite place. Be sure and specify certain religious, spiritual, or cultural traditions that you would like to have during your visitation, funeral, or memorial service. You can make arrangements directly with a funeral home or crematory. Read these tips on planning a funeral . If you choose not to be embalmed or cremated, most states allow families to take care of transportation, preparation of the body, and other needed arrangements. Learn more about the burial options available in your state . Put your preferences in writing and give copies to your loved ones and, if you have one, your lawyer.

You may also be interested in

• Reading more about advance care planning
• Learning about end-of-life care
• Viewing financial planning for people with Alzheimer’s disease

Sign up for e-alerts about healthy aging

For more information about getting your affairs in order.

American Bar Association 800-285-2221  www.americanbar.org

CaringInfo National Hospice and Palliative Care Organization 800-658-8898 [email protected] www.caringinfo.org

The Conversation Project 866-787-0831 https://theconversationproject.org

Eldercare Locator 800-677-1116 [email protected] https://eldercare.acl.gov

National Academy of Elder Law Attorneys 703-942-5711 [email protected] www.naela.org

National Elder Law Foundation 520-881-1076 [email protected] www.nelf.org

PREPARE for Your Care [email protected] https://prepareforyourcare.org 

This content is provided by the NIH National Institute on Aging (NIA). NIA scientists and other experts review this content to ensure it is accurate and up to date.

Content reviewed: February 1, 2023

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Making End-of-Life Decisions: What Are Your Important Papers?

By Family Caregiver Alliance

As you face aging and the need to make plans for your future, you face having to make decisions about many aspects of your lives. These legal and health care decisions not only protect you from others making decisions for your care that you do not want, they also protect family and loved ones by giving them guidance in the care that you would like to receive. After completing all the legal paperwork, the next step is to sit down and talk to family about the decisions you have made and why.

What Are the Documents Everyone Should Have?

Advance health care directive.

What it does: Gives power to a person you designate to make health care decisions for you, ONLY IF you can’t speak for yourself

• Also called Living Will, Durable Power of Attorney for Healthcare.
• Each state has slightly different versions of the form, but a form from one state will be honored in another state.
• Hospitals and most doctor’s offices will provide you with the form upon request.
• Everyone over 18 should have one.
• Must be completed while you are competent to know what you are signing, i.e. without dementia.        
• Often used to decide on feeding tubes, ventilators, and other treatments at the end of life or when someone is unconscious.
• Only needs to be witnessed; does not need to be notarized.

What happens if you don’t have an Advance Health Care Directive?

• Doctors will do everything to treat your condition and keep you alive.
• Family will be asked what to do.
• If family does not know what your wishes are, this might lead to family conflict and guilt over making the wrong decision.
• Physician training, hospital, and nursing home policies often dictate the use of “heroic means” to sustain life, for example, “reviving” a very ill person after a stroke or using a respirator for someone deemed medically “brain dead” are standard procedures used in many hospitals.

What it does: Stands for Physicians Orders for Life Sustaining Treatment and replaces DNR—Do Not Resuscitate

• Allows individuals with life-threatening illnesses to decide with their doctors what treatment they would or wouldn’t want. Since it is a physician’s order, it is not open to the will of others.
• Is helpful if you do not want 911 emergency responders to perform CPR (Cardio-pulmonary Resuscitation) and expands on other treatments you might or might not want.

What happens if you don’t have a POLST?

• If 911 is called, EMTs are required to do everything possible to resuscitate a person and keep him/her alive until they arrive at the hospital.

 What it does: Says how you want your estate (money and belongings) to be dispersed to family, friends, organizations, etc. after you die

• Also called Last Will and Testament.
• Each state has different laws about estates, but most states will honor an out state will.
• Can be handwritten or completed using online forms, but necessary to be witnessed and/or notarized.
• If estate is complicated or over $100,000, it is best to have an attorney help you write the will or review what you wrote.    
• Must be completed while you are competent to know what you are signing, i.e. without dementia.
• In a will, you appoint someone to be the executor or administrator who will pay your final bills and see that your wishes are carried out.
• Probate is the transferring of property when someone dies. The probate court oversees the executor to assure that the estate is divided as stated in the will.

 What happens if you don’t have a will?

If you die without a will, the court will probate your estate, e.g. decide how your estate should be distributed.

Durable Power of Attorney for Finance

What it does: Allows someone to access your finances, e.g checking account, investments, property in order to pay your bills

• A Durable Power of Attorney is valid even if you are incapacitated.
• Needs to be someone you trust, as this person has a lot of control over your finances. If you don’t have someone you trust, you should consult a professional.  
• Spouses might not have access to all of your funds unless everything, including investments, is held as joint property.

What happens if you don’t have a Power of Attorney for Finance?

• If you don’t have a durable power of attorney for finance and you can’t manage your finances, a judge will have to appoint someone to do so. It may mean you will have to be conserved, that is, someone appointed by the court will oversee your care and finances.

Final Arrangements

What it does: States what you would like to happen after your death—whether you would like cremation or burial—and lets the family know.  Also lets loved ones know about your wishes regarding organ donation and other special arrangements.

• Put your wishes in writing in a place family members can find them.
• The more decisions you make beforehand, the fewer decisions family has to make during a difficult time when they are grieving.

What happens if you don’t make your wishes known about final arrangements?

• Family can often be in conflict about what you would have wanted.  
• The law can determine who has the power to make the decision if it is unclear or there is conflict.

What Are the Other Things You Might Need?

What is is: A trust creates a legal entity that holds your assets for you so that your estate does not have to go through probate when you die.

• Also called a Living Trust.
• You name a trustee to oversee the trust both while you are alive and to distribute the trust to beneficiaries when you die.
• You may be the trustee of the trust while you are alive, in which case you name a successor trustee for the trust who will manage it after you die or become incapacitated.
• A revocable trust allows you to control everything that happens in the trust while you are alive.
• An irrevocable trust cannot be changed without the beneficiary’s consent.
• Special needs trust: Puts money aside to help someone who is disabled
• Charitable trust: Money given to a charity
• Bypass trust: Irrevocable trust passes assets to the spouse and then the children at death of second parent, limiting estate taxes
• Life insurance trust: Removes life insurance from estate and thus estate taxes
• Generation skipping trust: Allows grandchildren to directly inherit without paying taxes

What happens if you don’t have a trust?

• Depending on the value of your assets, your estate will go through probate, which can take several months and incur costs to the court.

Beneficiary Forms

Bank accounts, investments, insurance, and retirement plans can be designated as “payable on death” to a named beneficiary, which means the funds don’t have to go through probate.

• Allows access to funds immediately, rather than waiting for probate to close.

What happens if you don’t have fund “payable on death”?

• Unless funds are in a trust, the estate must be probated through the court, which can take several months (when the funds might not be available) and incur costs to the court

Where to Find My Important Papers

Have a central place to keep wills, trusts, powers of attorney, etc. so that family members will know where to look for these documents.          What happens if you don’t have a central place?

Often, particularly in times of emergency and stress, we get confused and don’t know where something important might be. Having a place to go to will reduce the possibility of forms being misplaced or lost. These legal forms are necessary to assure the care you or a loved one might want are carried out. 

In a recent survey, 81% of the people said they think about these issues: however only 33% said they had completed the necessary forms. Although it is hard to talk about and think about, it is important to take care of these matters for your own sake and for the sake of your family.

Family Caregiver Alliance National Center on Caregiving (415) 434-3388  |  (800) 445-8106 Website: www.caregiver.org E-mail: [email protected] FCA CareNav:  https://fca.cacrc.org/login Services by State: https://www.caregiver.org/connecting-caregivers/services-by-state/

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues and provides assistance in the development of public and private programs for caregivers. For residents of the greater San Francisco Bay Area, FCA provides direct support services for caregivers of those with Alzheimer’s disease, stroke, traumatic brain injury, Parkinson’s, and other debilitating health conditions that strike adults.

Other Organizations and Links

National Academy of Elder Law Attorneys www.naela.org  

National Association of Area Agencies on Aging www.n4a.org

National Senior Citizens Law Center www.nsclc.org

Compassion and Choices www.compassionandchoices.org

This fact sheet was prepared by Family Caregiver Alliance. ©2012 Family Caregiver Alliance. All rights reserved.

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Family Communication at the End of Life

People often feel awkward and ill at ease when faced with the opportunity for communication at the end of life, thus the overall theme for the articles in this special issue is the creation of more awareness and knowledge regarding the depth, breadth, and importance of current research exploring family communication at the end of life. This introductory essay attempts to accomplish the following: (1) discuss the importance of talk regarding death; (2) highlight the formative role of family interactions on the death and dying process; and (3) outline the articles in this special issue. Scholars contributing to this special issue on “Family Communication at the End of Life” have provided evidence that communication is important between and for terminally ill individuals, family members, and healthcare/palliative care specialists. Overall, research exploring communication at the end of life is especially relevant because every person experiences the death and loss of loved ones, and ultimately faces the reality of their own death.

The articles that compose this special issue focus on communication, families, and the end of life. Why is family communication at the end of life important? Taking a communication viewpoint on death and dying highlights the messages (both verbal and nonverbal) that occur between individuals pertaining to the topic and/or circumstances of death and dying [ 1 ]. Scholarly and clinical attention to communication at the end of life is imperative to improve medical, psychological, and relational outcomes for those dealing with the death and dying process (i.e., individuals who are terminally ill, as well as their close family members). However, communication at the end of life can be wrought with challenges, as many societies possess a belief of avoidance regarding death and dying [ 2 ]. Many reasons for avoidance regarding death and dying have been suggested by scholars such as: fear [ 3 ], cultural norms [ 4 ], religious beliefs [ 5 ], and/or family’s views of death as a taboo topic [ 6 , 7 ]. In the American Culture, where the majority of people die in hospitals, death has been routinely denied, sterilized, and/or removed from view [ 8 ]. Talking about dying is not morbid, nor is it magical talk that invites death into peoples’ lives, as some cultures believe [ 9 ], but it is often uncomfortable for family members [ 10 ]. It is uncomfortable because communication is a skill that takes practice and, in general, people have no experience with communication at the end of life; these interactions usually occur in private and behind closed doors [ 1 ]. It is not surprising that individuals feel awkward and ill at ease when faced with the opportunity for communication at the end of life. Thus, the overall theme for the articles in this special issue is the creation of more awareness and knowledge regarding the depth, breadth, and importance of current research exploring family communication at the end of life. This introductory essay attempts to accomplish the following: (1) discuss the importance of talk regarding death; (2) highlight the formative role of family interactions in the death and dying process; and (3) outline the articles in this special issue.

Communication at the end of life, before there is an impending death, can help remove the stigma that surrounds the topic of death and dying [ 1 ]. Talking about dying with the person that is terminally ill can relieve anxiety for both participants in the conversation and it can help ensure that final wishes regarding treatment at the end of life are honored [ 11 ]. Final conversations between the terminally ill and their family members can help individuals begin the grieving process while their terminally ill loved one is still present and can help in the process; it can help family members move on after the death without regret because nothing was left unsaid; and it can help individuals grow from the experience [ 10 ].

Focusing on the family at the end of life brings to the forefront the importance of family members and their interactions with the terminally ill for many reasons. Family members are very often the primary caregivers at the end of life and spend the most time with the terminally ill loved one [ 1 ]. Individuals’ daily routines and interactions are the most impacted throughout the end of life journey [ 12 ]. Family members are the ones that deal with the outcomes following the death of their loved one, therefore they have the most investment in the communication that occurs at the end of life [ 7 ]. In addition, family members are essential at the end of life because of the role they play as decision-makers and their responsibility in fulfilling the terminally ill’s final wishes [ 13 ]. Lastly, family members are the primary communicators with healthcare and palliative care professionals (e.g., doctors, nurses, clergy, social workers, et al.) regarding the care and health decisions surrounding the end of life journey of their dying loved ones [ 14 ].

The dying process for the terminally ill or aging is not a journey taken alone; it is a journey that is taken in the company of family members and loved ones, healthcare workers (e.g., doctors, nurses, clergy, etc.), and if fortunate enough, palliative care specialists. When the terminally ill have the opportunity and the openness to freely talk about what is on their minds and hearts, the end result is often relief of stress, more peaceful interactions, and greater readiness for the impending outcome [ 8 ]. How does effective communication at the end of life accomplish these positive outcomes? This is best highlighted through four explanations. First, the desires of the terminally ill become a priority and their voice is heard more clearly [ 15 ]. Second, both the family members and the terminally ill are more open, accepting, and ready for the end of life journey, therefore the terminally ill may be admitted earlier rather than later into Hospice. Patients that enter Hospice often have a better-quality end of life, with less pain and suffering, as well as a network of important social support and direction for families [ 15 ]. Third, the mutual acceptance of the impending death decreases the use of futile medical involvement near death that prolongs the inevitable and often leads to more pain for the terminally ill and more anguish for the family members as they watch their loved one suffer [ 15 ]. Fourth, participants are more willing to have the more intimate and authentic conversations that really should occur between family members and their dying loved ones at the end of life, creating a sense of closure and completion of their relationships [ 10 ].

With the goal of understanding the role, impact, and importance of communication at the end of life, researchers have been conducting research in earnest for the past 20 years focusing on both the communication between the terminally ill and health/palliative care professionals [ 7 , 16 ], and the communication between the terminally ill and their family members [ 1 , 16 ]. Communication scholars have been building a foundation of information and creating a body of knowledge pertaining to the importance of effective family communication at the end of life [ 17 ].

The fifteen articles that are included in this special issue on “Family Communication at the End of Life” are written by experts that focus primarily on communication at the end of life. Some of the authors have been working in this area for 20 years, while others are new scholars who represent the future directions for investigating communication at the end of life. All have a passion to help the everyday person struggling with the impending loss of a loved one in their family and to help the healthcare and/or palliative care professionals that work to improve their communication with the terminally ill, their family members, and their health coworkers. This special issue includes both quantitative (numbers that enable researchers to make generalizations) and qualitative methods (descriptions of people’s experiences) of inquiry highlighting the importance of a variety of methods for examining communication at the end of life. The diversity of methodology underscores the importance of different questions and perspectives on the investigation of family communication at the end of life.

Upon reflection, there are five major themes in this special issue exploring family communication at the end of life. The first area focuses on the new trend for communities and individuals that want to take the mystery and fear out of death and dying through communication. Specifically, the authors examine the importance of and the approaches for beginning the conversation about death and dying earlier rather than later. Amongst the three articles, one creates the argument that the communication about end of life should begin far earlier than is the current norm in their article “Upstreaming and Normalizing Advance Care Planning Conversations—A Public Health Approach” [ 18 ]. The second and third articles discuss unique situations to begin the conversations of death and dying. In the articles “Death Cafés: Death Doulas and Family Communication” [ 19 ] and “Contradictions and Promise for End-of-Life Communication among Family and Friends: Death over Dinner Conversations” [ 20 ], the authors highlight and analyze new ways to begin these conversations about death and dying. Talking about death and dying in these safe and voluntary environments, rather than in the midst of a terminal illness situation, may help to alleviate fear of death and normalize communication at the end of life.

The second theme of this special issue focuses upon who is making decisions and how they are made at the end of life. One article, “Designing Effective Interactions for Concordance around End-of-Life Care Decisions: Lessons from Hospice Admission Nurses” [ 21 ], highlights the insight gained from Hospice professionals regarding the important role that family members can and should play with their terminally ill loved one in the decision-making process regarding end of life care. The second article, “Family Communication about End-of-Life Decisions and the Enactment of the Decision-Maker Role” [ 22 ], focuses upon who in the family becomes the decision-maker for the family at the end of life and the facets that impact that role adoption, as well as the challenges that the chosen person faces in making the final decisions for the terminally ill.

The third theme highlights how age and diseases that come with getting older requires changes in how families communicate at the end of life. With the growing population in this era of “Baby Boomers” these articles begin a much needed discussion for families. One article, “How Older Adults and Their Families Perceive Family Talk about Aging-Related EOL Issues: A Dialectical Analysis” [ 23 ], focuses on the tensions inherent in communication at the end of life when it is complicated by aging issues. The second article, “Dementia at the End of Life and Family Partners: A Symbolic Interactionist Perspective on Communication” [ 24 ], suggests that family members can learn to live with their loved one at the end of life in new ways that can be fulfilling and satisfying for all parties involved. This article also acknowledges the challenges that are inherent when faced with a loved one with dementia at the end of life and offers suggestions for successful ways to communicate with them.

The fourth theme includes four articles that underscore the importance of good (i.e., satisfying for participants, effective for addressing needs, fulfilling goals) communication between the terminally ill, family members, and health/palliative care professionals. All participants involved must become a cohesive team focused on managing a number of relevant issues at the end of life. For example, one article, “Cancer Communication and Family Caregiver Quality of Life” [ 25 ], emphasizes the importance of acknowledging the overwhelming stress on the family caregiver. The crux of this article acknowledges the stress and demands put upon the family caregiver(s) and suggests the importance of effective communication for improving the overall welfare of family members and by doing so it improves the circumstances for the terminally ill as well. A second article, “Communication Matters: Exploring the Intersection of Family and Practitioner End of Life Communication” [ 26 ], acknowledges the inherent tension between the family’s desire for good care versus their acceptance that a cure is no longer a realistic goal, as well as the role that healthcare providers play in helping family members manage this tension. This article provides pragmatic communication solutions and suggestions to facilitate useful and mindful end of life communication between and among family members and healthcare providers. A third article on this topic, “Physicians’ Religious Topic Avoidance during Clinical Interactions” [ 27 ], indicates that many doctors are ill-prepared to talk about religious/spiritual issues when talking with terminally ill patients and their family members. Religious/spiritual issues are very important to a majority of people at the end of life [ 4 ], therefore the avoidance of these conversations due to the discomfort, inexperience, or lack of knowledge on this topic by doctors impacts the overall quality and satisfaction of the interaction. A fourth article titled “Palliative Care and the Family Caregiver: Trading Mutual Pretense (Empathy) for a Sustained Gaze (Compassion)” [ 28 ] assesses the impact of family members’ health literacy and its influence on communication at the end of life, as well as the determination of what kind and degree of healthcare is provided at the end of life.

The fifth and final theme of this special issue brings to the forefront the importance of exploring, acknowledging, and valuing the perspective of the family members’ experiences and recollections of their communication at the end of life. One article, “Still Searching: A Meta-Synthesis of a Good Death from the Bereaved Family Member Perspective” [ 29 ], reviews a large body of research regarding the meaning of a good death. The authors conclude that family members may experience either a “good death” or a “bad death” of a their loved one based on a number of factors: issues pertaining to the final care experiences of their loved ones, perceptions of the interactions between themselves and their loved one, and their interactions with the palliative care health systems used during and following the death. The authors also provide suggestions on how to improve the quality of these experiences. A second article, “Communicatively Constructing the Bright and Dark Sides of Hope: Family Caregivers’ Experiences during End of Life Cancer Care” [ 30 ], highlights the fact that family members often focus on the tension between the hope for a “cure” (also known as “the bright side,” even if it is based on avoidance and/or fake perceptions) and the hope for a “good death” (also known as “the dark side,” acknowledging and accepting the impending death). The article highlights the role of communication for promising social support, prioritizing family, and managing the honesty of the situation). A third article, “Death of an Ex-Spouse: Lessons in Family Communication about Disenfranchised Grief” [ 31 ], focuses on the grief that is not acknowledged, is frequently disqualified, and often cannot be acknowledged publically because of social circumstances. The communication at the end of life and following the death in these circumstances is different but still important for the individual experiencing the loss and grief. A fourth article focusing specifically on the family perspective of the communication at the end of life journey, entitled “Final Conversations: Overview and Practical Implications for Patients, Families, and Healthcare Workers” [ 32 ], reviews twelve years of published research exploring personal communication from the family members’ viewpoint. Family members ultimately must go on living following the death, and in that process they recall and reflect on their final conversations and interactions experienced during the end of life journey for months and even years [ 1 ]. Therefore, communication at the end of life potentially has the greatest and longest-lasting impact on family members. The article briefly highlights the most common themes of final conversations, provides pragmatic suggestions regarding communication at the end of life for the terminally ill, family members—including children and adolescents [ 33 , 34 ], and palliative/healthcare professionals.

In conclusion, the scholars contributing to this special issue on “Family Communication at the End of Life” have provided evidence that communication is important for terminally ill individuals, family members, and healthcare/palliative care specialists. This research exploring communication at the end of life is especially relevant because every person experiences the death and loss of loved ones and ultimately faces the reality of their own death [ 10 ]. When the terminally ill and their loved ones (most often their biological, legal, or chosen family members) have the opportunity and the openness to freely talk about what is on their minds and hearts at the end of life, the end result is often the relief of stress, peaceful interactions, and greater readiness for the impending outcome [ 9 ]. Still, such talks are not without their challenges [ 3 ]. In addition, communication at the end of life between the terminally ill and family members results in more satisfying care and an increased sense of well-being at the end of life for the dying [ 7 ]. Ultimately, the communication that occurs at the end of life between the terminally ill, family members, and healthcare specialists are critical for a “good death,” because it is only through communication where peoples’ true wishes are heard, understood, and followed that their loved ones are left without regret [ 10 ]. True regret comes from what is not communicated at the end of life.

Conflicts of Interest

The author declares no conflict of interest.