End-of-life planning: Definition and what to expect (2023)

End-of-life planning refers to the steps a person takes to get their affairs in order and determine how they want to spend their last days. Also known as advance care planning, it typically involves a person completing a living will, a healthcare proxy, and a last will and testament.

Whether a person is well or facing a terminal illness, end-of-life planning helps ensure that those who care for them can carry out their last wishes. While it may be a difficult subject to consider and discuss, it is important for a person to have their affairs in order to help facilitate a smooth process after their passing.

In this article, we will discuss what people can expect with end-of-life planning.

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End-of-life planning provides people with tools to control their financial and healthcare decisions while they can still take part in the decision-making process. A person usually starts advance care planning steps with a healthcare professional. They can involve conversations with caregivers about what they would want in the event of a life threatening illness or injury.

This type of planning may help alleviate unnecessary pain and discomfort, improve quality of life, and provide a better understanding of decision-making challenges for a person and their caregivers.

Individuals do not need a lawyer for an advance directive, living will, or healthcare proxy. But a person may need legal help for special circumstances and power of attorney. The National Institute on Aging has an easy-to-follow checklist to help a person make legal and financial plans now for their healthcare in the future.

(Video) End-of-life planning definition and what to expect | What to Know and Do

End-of-life planning involves forethought to ensure that a person receives healthcare treatment consistent with their wishes and preferences, should they be unable to make their own decisions or speak for themselves. It can require people to answer specific and difficult questions about death and dying. Questions a person may want to consider include:

  • Do I need or have a will?
  • Does my family know where I keep my important papers?
  • Do I have life insurance or money set aside for burial, cremation, or funeral expenses?
  • How and where do I wish to die if I have a choice?
  • Do I want lifesaving measures if or when they become necessary?
  • Is palliative care right for me?
  • How do I want my body handled after my death?
  • Do I have social media accounts that need closure?
  • Do I want to donate my organs or my body?
  • Do I want a death announcement or an obituary? What do I want in it?
  • What sort of memorial do I want, if any?

A person’s end of life can occur at home with or without hospice assistance, or in a nursing home, hospital, or hospice facility. Although a person does not always have a choice about where their end of life occurs, advance planning can help those responsible for the care of the person to make that decision when necessary.

  • Home: An individual may receive end-of-life care in their own home. The individual’s doctor can help plan for home care help.
  • Hospice care: This involves end-of-life care for people who decide to stop treatment, or when there is no available treatment or cure for their medical condition. A person can receive hospice care in their home or at a medical facility.
  • Skilled nursing facility or nursing home: Individuals who require higher levels of support may choose around-the-clock supervision and nursing care from a skilled facility or nursing home.
  • Hospital: Individuals who want life-sustaining treatment may choose a hospital setting for their end-of-life care.


(Video) What Happens When You Die? A Guide to End of Life Planning

According to the American Academy of Family Physicians, a person with Medicare has no out-of-pocket costs when advance care planning takes place during their annual wellness visit. Most people are eligible for Medicare, which can cover aspects of hospice care and services. In most states, Medicaid offers similar coverage.

End-of-life care at a hospital or skilled nursing facility depends upon a person’s insurance policy coverage. There are various ways a person can pay for end-of-life care services that Medicare does not cover, including life insurance, reverse mortgages, and long-term care insurance.

While it may seem daunting, planning ahead can help make advance care easier. This may include:


Documentation people may want to complete can include:

Advance directives

According to the Hospice Foundation of America, advance directives are documents known as a living will and a healthcare proxy.

A living will describes the type of medical care a person would want in specific circumstances. A healthcare proxy appoints someone of an individual’s choosing to have the authority to make decisions on their behalf if they cannot do so.

(Video) A Good Death: The inside story of a hospice

Research suggests that most physicians agree that having advanced directives helps in the end-of-life decision-making process by reducing the overuse of life-sustaining treatments and increasing the use of comfort measures.

A person signs an advance directive in the presence of two witnesses. Some states also require notarization of the advance directive. Individuals can go over and change their advance directives as many times as necessary. People can find an example of an advance directive form here.

POLST: Portable medical orders

POLST are medical orders that travel with a person who is seriously ill or has advanced frailty. Healthcare professionals use these orders when a person requires medical care and cannot communicate their desires.

Last will and testament

A last will and testament, also known as a will, is a legal document where the decedent (person who dies) gives instructions to a named executor on how to distribute their finances and possessions.

Power of attorney

Power of attorney is a legal document that allows a person to appoint an agent to act on their behalf, should they become incapacitated or unable to function as usual. A person may become unable to make decisions due to dementia or Alzheimer’s disease, an accidental brain injury, or a stroke.

Organ and tissue donor designation

A person can choose to donate organs, tissues, or both upon their death. People can learn more about organ donation from the Health Resources & Services Administration.

Choosing how to die

Everyone has different thoughts, values, and beliefs on how they want to die. Some examples may include:

Treatment refusal

A person may decide to refuse life-sustaining treatment if it does not help or prolongs suffering from their underlying medical condition. Examples of life-sustaining treatment may include:

  • mechanical ventilation
  • renal dialysis
  • chemotherapy
  • medications to restart the heart
  • antibiotics
  • artificial nutrition and hydration (tube feedings)

Assisted suicide or euthanasia

Euthanasia and physician-assisted suicide are when a mentally competent, terminally ill adult makes the choice to end their life with prescribed medication. The laws on assisted suicide vary according to country.

Click here to learn more about euthanasia and assisted suicide.

(Video) A Lesson in Dying: A Nurse With Cancer Offers Herself as Instruction in Caring | The New York Times

Natural death

A person allows a disease to take its natural course until they experience a natural death. The person still receives supportive care measures from caregivers and often a hospice.

Body disposition

Body disposition is what a person wants to happen with their body after death. Many options are available and may come with different costs. Options can include:

  • traditional in-ground or mausoleum burial
  • natural, or green, burial
  • cremation
  • body donation for medical education or scientific research
  • hydro-cremation

Having a conversation about an end-of-life plan with loved ones may not seem necessary when a person is well. But as a person’s health can change in a moment’s time, it is important to discuss and document a person’s wishes while they are of sound mind and body.

The Hospice Foundation of America has suggestions on starting an end-of-life conversation. Additionally, Compassion & Choices Plan Your Care Resource Center has a free downloadable toolkit that can help guide a person in having end-of-life conversations with healthcare professionals and others a person may want involved in their end-of-life care.


(Video) How Doctors Tell Patients They're Dying | Being Mortal | FRONTLINE

End-of-life planning refers to the steps a person takes to plan their end-of-life care wishes. These steps typically include discussions with loved ones and healthcare professionals, along with completing documents such as advance directives and powers of attorney.

Thinking about the end-of-life of care may not be easy, but making these decisions ahead of time can offer peace of mind to both the person and those responsible for carrying out their wishes.


What do you expect in the end of life? ›

Pulse and heartbeat are irregular or hard to feel or hear. Body temperature drops. Skin on their knees, feet, and hands turns a mottled bluish-purple (often in the last 24 hours) Breathing is interrupted by gasping and slows until it stops entirely.

What are the 5 priorities of end of life care? ›

 The five priorities focus on: recognising that someone is dying; communicating sensitively with them and their family; involving them in decisions; supporting them and their family; and creating an individual plan of care that includes adequate nutrition and hydration.

What are the 6 stages of end of life care pathway? ›

  • The remit:
  • Step 1 Discussions as end of life approaches.
  • Step 2 Assessment, care planning and review.
  • Step 3 Coordination of care.
  • Step 4 Delivery of high quality care in care homes.
  • Step 5 Care in the last days of life.
  • Step 6 Care after death.

How long can a person live on end of life care? ›

When does end of life care begin? End of life care should begin when you need it and may last a few days or months, or sometimes more than a year. People in lots of different situations can benefit from end of life care. Some of them may be expected to die within the next few hours or days.

What are 4 goals for end of life care? ›

Generally speaking, people who are dying need care in four areas: physical comfort, mental and emotional needs, spiritual needs, and practical tasks. Of course, the family of the dying person needs support as well, with practical tasks and emotional distress.

What are the last signs of end of life? ›

End-of-Life Signs: The Final Days and Hours
  • Breathing difficulties. Patients may go long periods without breathing, followed by quick breaths. ...
  • Drop in body temperature and blood pressure. ...
  • Less desire for food or drink. ...
  • Changes in sleeping patterns. ...
  • Confusion or withdraw.

What are end of life protocols? ›

The ESMO protocol delineates the patient criteria for use of the protocol, which include: (1) a plan not to resuscitate the patient, (2) the patient has a terminal illness, (3) the patient is experiencing symptoms such as uncontrolled pain or dyspnea for which opiate medications are an accepted treatment, and (4) the ...

What are the 5 P's of patient care? ›

During hourly rounds with patients, our nursing and support staff ask about the standard 5 Ps: potty, pain, position, possessions and peaceful environment. When our team members ask about these five areas, it gives them the opportunity to proactively address the most common patient needs.

What matters most in end of life care? ›

Interpretation: Seriously ill patients and family members have defined the importance of various elements related to quality end-of-life care. The most important elements related to trust in the treating physician, avoidance of unwanted life support, effective communication, continuity of care and life completion.

What are the 5 stages that a dying person goes through? ›

The stages of the Kubler-Ross theory include denial, anger, bargaining, depression, and acceptance.

What is the difference between palliative care and end of life care? ›

Although it can include end of life care, palliative care is much broader and can last for longer. Having palliative care doesn't necessarily mean that you're likely to die soon – some people have palliative care for years. End of life care offers treatment and support for people who are near the end of their life.

What should be included in an end of life care plan? ›

End of life care plan
  • priorities and preferences for care and treatment.
  • decisions about resuscitation.
  • views about how and where they would like to be looked.
  • after in their last days of life.
  • who they would like to have with them.
  • any spiritual or religious beliefs they would like to be considered.
30 Mar 2022

How long do the doctors let you live on life support? ›

More invasive life support, such as heart/lung bypass, is only maintained for a few hours or days, but patients with artificial hearts have survived for as long as 512 days. Read more: Are near-death experiences just hallucinations? Do people in a coma dream?

Who pays for end of life care at home? ›

Through the continuing healthcare program (NHS CHC), the NHS can help you pay for end-of-life care. The NHS CHC is not means-tested, so it doesn't depend on how much money you have. If you're eligible, the program pays for all your social care include care home fees and carers if you're still living in your own home.

Does palliative care mean death is near? ›

Fact: Palliative care does not make death occur sooner. It helps improve comfort and quality of life from diagnosis until death. 2. Myth: Palliative care is only for people dying of cancer.

What questions should I ask at the end of life care? ›

Questions to ask your doctor
  • What is my prognosis? ...
  • If I decide to undergo treatment, what effect may it have on prolonging my life and how will it impact my quality of life?
  • What types of side effects does the treatment have and how severe are they? ...
  • What are the best and worst outcomes you've seen from this treatment?
24 May 2016

What is important to patients at the end of life? ›

Everyone will have different needs and wishes in their last days and hours. But there are some aspects of care you should do for all patients. These include communicating well, supporting them to make decisions about their care, maintaining hydration, managing their symptoms and medication.

What is the nurses role in end of life care? ›

Decisions about care at the end of a person's life often involve quality-of-life considerations. Nurses are obligated to provide care that includes the promotion of comfort, relief of pain and other symptoms, and support for patients, families, and others close to the patient.

What does a dying person think about? ›

Visions and Hallucinations

Visual or auditory hallucinations are often part of the dying experience. The appearance of family members or loved ones who have died is common. These visions are considered normal. The dying may turn their focus to “another world” and talk to people or see things that others do not see.

How do you know when someone is transitioning to death? ›

Often before death, people will lapse into an unconscious or coma-like state and become completely unresponsive. This is a very deep state of unconsciousness in which a person cannot be aroused, will not open their eyes, or will be unable to communicate or respond to touch.

What is the last sense to go before death? ›

They concluded that the dying brain responds to sound tones even during an unconscious state and that hearing is the last sense to go in the dying process. Many people who have had near-death experiences describe a sense of "awe" or "bliss" and a reluctance to come back into their bodies after being revived.

What is the last injection given at end of life? ›

Anticipatory medicines are sometimes also called end of life medicines or just in case medicines. It's common to prescribe medicine for pain, anxiety and agitation, nausea and vomiting and noisy respiratory secretions.

What does good end of life care look like? ›

Good end of life care includes good communication between you, the people close to you and the staff caring for you. Your health and social care team should listen to your wishes and concerns and recommend someone who can help if they cannot. They should explain the situation to you clearly.

What are the 10 patient responsibilities? ›

Patient's Responsibilities
  • Providing information. ...
  • Asking questions. ...
  • Following instructions. ...
  • Accepting results. ...
  • Following facility rules and regulations. ...
  • Showing respect and thoughtfulness. ...
  • Meeting financial commitments.

What are 3 patient responsibilities? ›

Patients have the responsibility to:

Ask questions. Follow the treatment plan recommended by their practitioner. Accept the outcome of their decision if they refuse treatment or do not follow their practitioner's instructions.

What are the 5 C's NHS? ›

The 6Cs are Care, Compassion, Competence, Communication, Courage and Commitment – all values essential to high quality care.

What is the main issue in end of life decisions? ›

The most important ethical problem faced by emergency physicians in end-of-life care is making ethical decisions on issues such as whether to perform resuscitation and continue life-sustaining treatment in cases where the patients are not competent to make decisions.

What is the decision making at the end of life? ›

The phenomenon of end-of-life (EOL) decision-making is a lived experience by which individuals or families make decisions about care they will receive prior to death.

What are two options for end of life care? ›

The three most common places people at the end-of-life die are at home, in a hospital, or in a care facility. While not everyone has the chance to decide where they will die, people who know the end of life is approaching may be able to plan ahead.

How do you know when death is weeks away? ›

Weeks Before Death Symptoms

They may begin to sleep more often and for longer periods. They will start to refuse foods that are difficult to eat or digest, but eventually they will refuse all solid foods. Do not try to force them to eat, as it will only bring discomfort to them.

Which of the 5 senses is the last to go when dying? ›

Research suggests that even as your body transitions into unconsciousness, it's possible that you'll still be able to feel comforting touches from your loved ones and hear them speaking. Touch and hearing are the last senses to go when we die.

How long is the final stage of dying? ›

How Long Does the Active Stage of Dying Last? The active stage of dying generally only lasts for about 3 days. The active stage is preceded by an approximately 3-week period of the pre-active dying stage.

How long is the average stay in palliative care? ›

Most palliative care units provide care in the last months or weeks of life, but some acute palliative care units are set up for short stays to manage symptoms. A hospice facility or program offers supportive care for people at the end of life as well as their families.

What are the 3 forms of palliative care? ›

What Is Palliative Care?
  • Symptom management (e.g., pain medications) and medical care for the disease (e.g., chemotherapy)
  • Care techniques that promote comfort and good physical and mental well-being. ...
  • Supporting loved ones and caregivers in providing care, such as activities of daily living.
14 Sept 2022

How long can someone receive palliative care? ›

Patients are actually eligible to receive this care when they have been diagnosed with a terminal illness with six months or less to live if the disease follows its typical progress.

What can I expect from palliative care at home? ›

Following are the palliative services that can come to your home: Medical evaluations, including monitoring for common symptoms like nausea, vomiting, pain, and anxiety. Prescribing medications to ease these symptoms. Additional medical applications like treating wounds and other medical needs.

When should you pull the plug on life support? ›

How Long Do Doctors Wait To Pull The Plug? This research supports his recommendation that all patients wait at least six or seven days after the procedure. The patient's chances of survival will be significantly reduced if they remain intubated and on a ventilator until the seventh day.

Who decides to take someone off life support? ›

Typically, the person the patient designated as the medical power of attorney gets to decide whether life support should remain active or not. In the event that the patient has not designated medical power of attorney to anyone, the patient's closest relative or friend receives the responsibility.

What are the chances of surviving after being put on life support? ›

Interventions: Extracorporeal life support was utilized in 36 acute respiratory failure adult patients with a variety of diagnoses and an estimated mortality rate of > 90%.

Can you have end of life care at home? ›

You may not need to move away from home to receive care, as end of life and hospice care can be provided at home. To find out what's available locally, ask your GP. Your GP can arrange for community nurses to come to your home and provide nursing care for you there.

What happens at the end of life? ›

Pulse and heartbeat are irregular or hard to feel or hear. Body temperature drops. Skin on their knees, feet, and hands turns a mottled bluish-purple (often in the last 24 hours) Breathing is interrupted by gasping and slows until it stops entirely.

Do they feed you on end of life care? ›

There are many different types of treatment that can be used to keep people with serious or terminal illnesses alive. These are called life-sustaining treatments. They include: nutritional support through a feeding tube.

How long can end of life last? ›

The end-of-life period—when body systems shut down and death is imminent—typically lasts from a matter of days to a couple of weeks. Some patients die gently and tranquilly, while others seem to fight the inevitable. Reassuring your loved one it is okay to die can help both of you through this process.

What are the signs of last days of life? ›

End-of-Life Signs: The Final Days and Hours
  • Breathing difficulties. Patients may go long periods without breathing, followed by quick breaths. ...
  • Drop in body temperature and blood pressure. ...
  • Less desire for food or drink. ...
  • Changes in sleeping patterns. ...
  • Confusion or withdraw.

Does palliative care include bathing? ›

Caregiving may include lifting, bathing, delivering meals, taking loved ones to doctor visits, handling difficult behaviors, and managing medications and family conflicts.

What is the most common symptom at the end of life? ›

Pain, shortness of breath, anxiety, incontinence, constipation, delirium, and restlessness are just a few signs that a loved one is going through the dying process.

What does it feel like at the end of life? ›

As a person is dying they will have less energy and become easily tired. They are likely to become weaker and may spend more time asleep. They may become detached from reality, or unaware of what is happening around them. They may be less interested in eating and drinking.

Is it painful at the end of life? ›

Does everyone get pain when they are dying? No – not everyone gets pain in their last weeks, days or hours of life. Some people have no pain at all. However, we know that many people with a terminal illness do experience pain.

How can doctors tell how long you have to live? ›

There are numerous measures – such as medical tests, physical exams and the patient's history – that can also be used to produce a statistical likelihood of surviving a specific length of time.

When someone is dying Are they aware? ›

Many people lose consciousness near the end of life. But they may still have some awareness of other people in the room. They may be able to hear what's being said or feel someone holding their hand.

What is the surge before death? ›

This difficult time may be complicated by a phenomenon known as the surge before death, or terminal lucidity, which can happen days, hours, or even minutes before a person's passing. Often occurring abruptly, this period of increased energy and alertness may give families false hope that their loved ones will recover.

How long does the final stage of life take? ›

The active stage of dying generally only lasts for about 3 days. The active stage is preceded by an approximately 3-week period of the pre-active dying stage. Though the active stage can be different for everyone, common symptoms include unresponsiveness and a significant drop in blood pressure.

What is the last organ to stop functioning after death? ›

It is natural to wonder what happens when you die. From a physical standpoint, death occurs when the body's vital functions stop entirely, including respiration (breathing), heart function, and, finally, brain function.

What is the difference between palliative and end of life care? ›

Although it can include end of life care, palliative care is much broader and can last for longer. Having palliative care doesn't necessarily mean that you're likely to die soon – some people have palliative care for years. End of life care offers treatment and support for people who are near the end of their life.


1. Before I die: a day with terminally ill patients | Death Land #2
(The Guardian)
2. Being Mortal (full documentary) | FRONTLINE
(FRONTLINE PBS | Official)
3. Jim Rickards: We're Looking At A Global Recession
(The Julia La Roche Show)
4. This Doctor Wants to Humanize Death | Op-Docs
(The New York Times)
5. Carl Sagan Predicted The Mess 2021 Would Be 25 years Ago
6. Waiting For The End [Official Music Video] - Linkin Park
(Linkin Park)
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