Death and Dying Are Part of Life: Why We Must Talk About it.
The Conversation We Keep Avoiding
Death is one of the few experiences that every human being will eventually encounter, yet it remains one of the most difficult subjects for individuals and families to discuss. We talk about health, aging, medical treatment, retirement, and caregiving, but conversations about death and the decisions surrounding the end of life are frequently postponed.
For some, discussing death feels frightening or uncomfortable. Others associate it with hopelessness, religious or cultural sensitivities, or the fear that acknowledging mortality means giving up on life. Families may avoid the subject because they do not want to upset an aging parent, worry a spouse, or create the impression that they are anticipating someone's death.
However, avoiding the conversation does not eliminate the decisions that may eventually need to be made. It can leave families uncertain about a loved one's preferences, create disagreements among relatives, and place difficult decisions in the hands of people who may never have discussed them with the individual concerned.
Death and dying are realities of life. Talking about them is not an expression of surrender; it is an act of preparation, respect, and personal responsibility.
End-of-life conversations provide an opportunity for individuals to express their values, identify the people they trust to make healthcare decisions, and communicate the types of medical treatment and comfort measures they would want if they could no longer speak for themselves. These discussions are not exclusively for older adults or people with terminal illnesses. They are relevant to adults at every stage of life.
Why Conversations About Death Matter
A serious illness, unexpected injury, stroke, or sudden medical deterioration can leave a person temporarily or permanently unable to communicate. When that happens, family members and healthcare professionals may need to make decisions about treatment, hospitalization, resuscitation, artificial ventilation, and other interventions.
Without prior conversations or documented preferences, relatives may be left trying to interpret what the individual would have wanted. Family members may disagree, sometimes because each person has a different understanding of the patient's values, beliefs, or wishes.
The National Institute on Aging (NIA) emphasizes the importance of advance care planning: considering and communicating future healthcare preferences before a person becomes unable to make or express those decisions. Advance care planning can help ensure that treatment decisions reflect an individual's values and preferences rather than leaving family members to make assumptions during a crisis.
Importantly, these conversations do not need to happen all at once. They can begin with relatively simple questions:
What matters most to you if you become seriously ill?
What would quality of life mean to you under difficult medical circumstances?
Are there medical treatments you would particularly want or prefer to avoid?
Who would you trust to make healthcare decisions if you could not communicate?
Where would you prefer to receive care if your illness became advanced?
What would comfort, dignity, and appropriate support look like for you?
These questions invite reflection rather than forcing immediate decisions. They also create opportunities for families to understand one another before circumstances become emotionally overwhelming.
Understanding Advance Care Planning and Advance Directives
Advance care planning is the process of thinking about, discussing, and documenting one's healthcare preferences for future situations in which decision-making capacity may be impaired or communication may no longer be possible.
An important part of this process is an advance healthcare directive. This is a legal document that can communicate a person's healthcare preferences and identify someone authorized to make medical decisions on their behalf when they are unable to do so.
Two commonly used components are
1. Living will
A living will communicates preferences about specific medical treatments and healthcare interventions under circumstances described in the document. Depending on the applicable state law and document, it may address life-sustaining treatment, artificial nutrition and hydration, and other medical decisions.
2. Healthcare power of attorney or healthcare agent designation
This allows an individual to appoint a trusted person to make healthcare decisions if the individual becomes unable to make or communicate those decisions. This person may be called a healthcare agent, proxy, representative, or surrogate, depending on the state.
Choosing this person deserves careful consideration. The individual should be someone who understands the person's values, is willing to accept the responsibility, and can communicate effectively with healthcare professionals and family members.
An advance directive is not necessarily a decision to refuse treatment. It is a mechanism for communicating preferences and identifying who should participate in decisions when the individual cannot speak for themselves. The National Institute on Aging provides guidance on advance directives, living wills, and healthcare proxies.
These documents should be reviewed periodically, particularly after major changes in health, relationships, or personal circumstances. A person's preferences may evolve, and the most current valid instructions should be available to the healthcare team.
DNR Orders: Understanding What They Mean—and What They Do Not Mean
One of the most misunderstood aspects of end-of-life planning is the Do Not Resuscitate (DNR) order.
A DNR is a medical order indicating that cardiopulmonary resuscitation (CPR) should not be attempted if a person's heart stops beating or the person stops breathing in the circumstances covered by the order. CPR may involve chest compressions, electrical defibrillation, medications, and other emergency interventions intended to restore circulation and breathing.
A DNR order is a specific medical decision. It does not automatically mean that a person refuses all medical treatment, does not want to be hospitalized, or should receive less attentive care.
For example, a person with a DNR order may still receive:
Treatment for infections when appropriate.
Oxygen and medications to relieve symptoms.
Pain management and other comfort measures.
Treatment for injuries or other medical conditions.
Nursing care, personal care, and emotional support.
Palliative care and hospice services when appropriate.
The distinction is essential. A decision not to receive CPR in the event of cardiac or respiratory arrest is not the same as a decision to refuse every available medical intervention.
The National Institute on Aging identifies DNR as a medical order concerning resuscitation and distinguishes it from other advance care planning documents.
A related term is Do Not Intubate (DNI), which indicates that a person does not want endotracheal intubation and mechanical ventilation under the circumstances specified in the medical order. DNR and DNI address different interventions and should not be assumed to mean the same thing.
Decisions about resuscitation should be discussed with a qualified healthcare professional, taking into account the person's medical condition, likely benefits and burdens of treatment, values, and informed preferences.
POLST: Translating Treatment Preferences Into Medical Orders
Another important term in end-of-life planning is POLST, which stands for Physician Orders for Life-Sustaining Treatment. Some states use related names for similar forms.
Unlike an advance directive, which generally communicates broader healthcare preferences and may designate a decision-maker, a POLST form translates specific treatment preferences into medical orders.
POLST is generally intended for people with serious illness or significant frailty for whom decisions about life-sustaining treatment are particularly relevant. It is completed through discussion between the individual, or an appropriate legally authorized representative when necessary, and a healthcare professional.
Depending on the state form and the person's circumstances, POLST may address:
Whether CPR should be attempted.
The level of medical intervention desired.
Hospital transfer and other treatment preferences.
Certain forms of life-sustaining treatment, such as mechanical ventilation or medically administered nutrition.
National POLST explains that advance directives and POLST forms serve different but complementary purposes. An advance directive provides broader instructions and may identify a healthcare decision-maker; POLST communicates specific medical orders intended to guide care across healthcare settings.
A POLST form is not intended to replace an advance directive, and it is not a routine form that every healthy adult needs to complete. It should be considered through an informed conversation with a healthcare professional when the person's medical circumstances make it appropriate.
The terminology, forms, and legal requirements can differ by state. Individuals should consult their healthcare professionals and applicable state resources rather than relying on a generic form found online.
Palliative Care and Hospice: Prioritizing Comfort and Quality of Life
Conversations about death and dying should also include an understanding of palliative care and hospice. These services are sometimes misunderstood, leading individuals and families to delay conversations that could help them manage serious illness more effectively.
Palliative care is specialized medical care focused on improving quality of life for people living with serious illnesses. It addresses symptoms such as pain, nausea, breathlessness, and emotional distress, while supporting patients and their families through complex healthcare decisions.
Importantly, palliative care can be provided alongside treatments intended to cure or control an illness. Receiving palliative care does not automatically mean that a person is dying or has stopped pursuing medical treatment.
Hospice care is a specialized form of care for people approaching the end of life when the focus shifts toward comfort rather than attempts to cure the terminal illness. In the United States, Medicare hospice eligibility generally requires physician certification that the person has a life expectancy of six months or less if the illness follows its usual course, along with the applicable election and coverage requirements.
Hospice care may include pain and symptom management, nursing support, emotional and spiritual care, assistance for family caregivers, and bereavement services.
The National Institute on Aging explains the distinctions between palliative and hospice care and emphasizes that both are centered on comfort and quality of life, although they differ in purpose, timing, and eligibility.
These services should not be viewed as evidence that someone has been abandoned by the healthcare system. Rather, they represent important approaches to addressing suffering, supporting families, and respecting a person's goals of care.
Dignity, Autonomy, and the Right to Be Heard
At the heart of end-of-life planning is the principle of personal autonomy: the right of individuals with decision-making capacity to participate in decisions about their own medical treatment.
This principle becomes especially important when a person is seriously ill, elderly, disabled, or approaching the end of life. Families may have strong opinions about what should happen, but their preferences should not automatically replace the informed decisions of the individual receiving care.
A person may want every medically appropriate opportunity to extend life. Another may place greater importance on comfort, remaining at home, avoiding certain invasive procedures, or maintaining the ability to communicate with loved ones. These preferences are personal and should not be judged simply because they differ from another person's beliefs.
When someone loses decision-making capacity, the designated healthcare agent or legally authorized surrogate may need to make decisions according to applicable law and the person's known wishes and values. Where those wishes are unknown, the decision-making process may involve the person's best interests and relevant legal standards.
The National Cancer Institute emphasizes that people facing serious illness should have opportunities to participate in discussions about their care and that their concerns about dignity, control, and the possibility of becoming a burden deserve attention.
Respecting dignity also means recognizing that people nearing the end of life remain individuals with emotional, social, cultural, and spiritual needs. They should not be reduced to a diagnosis, a prognosis, or a set of medical orders.
The Role of Families and Caregivers
Families and caregivers often become central participants in end-of-life care. They may help communicate preferences, coordinate appointments, manage medications, provide personal care, and support the individual through difficult medical decisions.
However, caregivers should not be expected to interpret medical orders or make major treatment decisions without appropriate information and professional guidance.
A responsible approach includes:
Initiating conversations early. Discuss preferences before a medical crisis whenever possible.
Identifying the decision-maker. Make sure the appropriate healthcare agent or proxy is known and that the person is willing to serve.
Documenting preferences. Complete applicable advance care planning documents and discuss relevant medical orders with healthcare professionals.
Making documents accessible. Ensure that family members and healthcare providers know where current documents and orders can be found.
Revisiting decisions. Review preferences as health conditions and personal priorities change.
Supporting the individual. Listen carefully, avoid imposing personal beliefs, and advocate for the person's expressed wishes.
Families may not always agree. A parent may prefer comfort-focused care while adult children want every possible intervention. A spouse may interpret a loved one's wishes differently from other relatives. Such disagreements can be emotionally difficult, particularly when decisions must be made quickly.
This is another reason to have conversations before a crisis. Clear communication can reduce uncertainty and help families understand that the objective is to respect the individual's preferences, not to make decisions based solely on fear or family pressure.
Making the Conversation Less Difficult
There is no single correct way to begin a conversation about death. The most effective approach is often a gradual, respectful discussion that allows individuals to express their thoughts without feeling pressured.
A conversation might begin with:
“I know this is not an easy subject, but I think it is important that we understand one another's wishes if a serious medical situation ever arises.”
Other helpful approaches include asking an aging parent what matters most to them, discussing the experiences of a friend or relative who received end-of-life care, or using a routine medical appointment as an opportunity to ask about advance care planning.
Healthcare professionals, social workers, chaplains, and palliative care teams can help facilitate these discussions when emotions or medical complexities make them difficult.
It is also important to respect the fact that some people may not want to discuss every detail immediately. Conversations should be sensitive to cultural values, religious beliefs, personal readiness, and the individual's desire for information.
The objective is not to force people to confront death on someone else's timetable. It is to create an environment in which they can make informed decisions and communicate their wishes without fear or judgment.
Death and dying are not subjects that should be reserved for hospital corridors, emergency departments, or the final days of someone's life. They deserve thoughtful attention while individuals still have the opportunity to reflect, communicate, and make decisions about their care.
We should not wait until someone can no longer speak to discover what mattered most to them. We should not leave families to guess, argue, or make assumptions when a loved one's wishes could have been discussed and documented earlier.
At Aricares Alliance, we believe that education, preparation, and compassionate care must extend throughout the aging and caregiving journey—including the difficult conversations surrounding death and dying.
Death is real. Dying is part of life. The conversation matters. Let us have it with honesty, compassion, and respect—before a crisis makes it necessary.
Disclaimer
This article is intended for general educational purposes and does not constitute medical or legal advice. Advance directives, DNR orders, POLST forms, and surrogate decision-making requirements vary by state. Individuals should consult qualified healthcare professionals and, when appropriate, legal counsel to understand their options and document their preferences.
Additional Resources
National Institute on Aging. Advance Care Planning: Advance Directives for Health Care. National Institutes of Health.https://www.nia.nih.gov/health/advance-care-planning/advance-care-planning-advance-directives-health-care
National POLST. Learn About POLST Forms.https://polst.org/for-patients/about-polst-form/
National Institute on Aging. What Are Palliative Care and Hospice Care? National Institutes of Health.https://www.nia.nih.gov/health/hospice-and-palliative-care/what-are-palliative-care-and-hospice-care
National Cancer Institute. End-of-Life Care. National Institutes of Health.https://www.cancer.gov/about-cancer/advanced-cancer/care-choices/care-fact-sheet
For training, Aricares Alliance offers FREE caregiver training. Please click here to start
Comments