What people want at the end of life (2024)

Most patients and families facing a terminal illness vividly recall being told about the grim prognosis. Through misplaced words and actions, health professionals can unwittingly inflict pain at such a vulnerable time — not only onto patients, but also onto friends and families, ultimately poisoning the dying or grieving process.

Suboptimal end-of-life discussions may arise from many factors. Informing a patient that he or she has a terminal illness will sometimes elicit our own unresolved feelings related to death and dying, making us very uncomfortable and less willing to take on this difficult task. We may wrongly attribute low priority to such discussions, especially when we are faced with other clinical care duties. More fundamentally, we may lack insight or training to fully engage in such critical conversations.

Asking “What do dying people want?” is a good first step toward improvement. For most patients, knowing that death will not occur in the next minutes or hours is important; being reassured about timing will provide hope. Once initial anxieties are allayed, a patient’s struggle will be in how to embrace life while preparing to die.

Few patients initiate conversations with words like resuscitation, inotropes or levels of care — words that are best used to communicate concepts among health professionals. Rather, patients speak of relationships with the people they love and who love them; what life means to them and how they might be remembered; the reality of death; their hope that they won’t be a burden to others; their worry about how those they are leaving behind will manage without them; and a fear of the process of dying, often mixed with a belief that pain and suffering are inevitable.

So what do dying people want? In short: truth, touch and time. They want others — family, friends and physicians — to be truthful with them in all respects, whether discussing the disease process, treatment options or personal relationships. They want truth but not at the expense of reassurance and hope. Hope is not limited to escaping death. Hope for many may be in savouring final moments with the people they love and who love them. Reassurance often includes plans to try to alleviate fears of pain, suffering and loneliness. Patients also crave being touched, both physically and emotionally — perhaps to be reminded that they are still living, perhaps because family and friends often distance themselves as a disease progresses toward death. Finally, patients want time, and in most cases, there is some time. Time is key for patients to come to terms with their illness, losses and unresolved issues as well as remaining hopes, so that their minds have time to change their hearts.

To avoid iatrogenic suffering caused by poor communication, it is important that we recognize the importance of end-of-life discussions. When we relegate such discussions to inexperienced members of a medical team without supervision or training, we signal that difficult communications are not important. Compassionate and skilled communication requires careful planning by experienced professionals and orchestration among all team members of the discussions, key messages and decisions.

Patients want and need a sense of connection with the person bearing bad or life-altering news, ideally through a long-term patient–provider relationship. They would prefer not to receive a rehearsed speech or pat answers delivered without context or feeling. Such detached interaction can be avoided if we first take the time to get to know our patients’ hopes, fears and dreams. Such conversations should lead to an understanding of the person, not simply of the disease.

Before initial patient encounters, some introspection is vital. We would benefit from a better understanding of our own sense of mortality and of seeing dying as a physical, psychological and spiritual experience. We must come to realize that most patients as well as health care providers have anxieties about death. Given the personal commitment required, it is ideal for health professionals to reflect on end-of-life issues with skilled professionals. Long-term mentorship and role modelling will help ensure continued growth and learning.

Ushering a patient through to the end of life requires a community of care providers, because ongoing support of patients and families may require many hours of repeated discussions over several days to weeks. The benefits of such health interventions are difficult to quantify in terms of cost-effectiveness, and they are often considered a luxury. Consequently, the numbers of spiritual care providers and social workers who carry much of this burden are decreasing.

Without an investment in training for all health professionals and ongoing support for palliative care, we will be “caring” for patients and families who feel abandoned, angry or overwhelmed by feelings of hopelessness. With proper support, awareness and training, all of us will be able to connect with terminally ill patients and their loved ones so that they feel sustained, rather than abandoned, at a time of great need.

Footnotes

Previously published at www.cmaj.ca

Competing interests: See www.cmaj.ca/misc/edboard.shtml for editorial advisory team statements. David Kuhl receives honoraria for speaking engagements and conferences related to end-of-life communications.

What people want at the end of life (2024)

FAQs

What people want at the end of life? ›

Some people may want to be at home when they die, while others may prefer to seek treatment in a hospital or facility until the very end. Many want to be surrounded by family and friends, but it's common for some to slip away while their loved ones aren't in the room.

What are the three most important end of life issues? ›

Pain - one of the things most feared by patients with life-threatening illness. Symptom control - including dyspnea, nausea, confusion, delirium, skin problems, and oral care. Psychological issues - especially depression, sadness, anxiety, fear, loneliness.

What people value at the end of life? ›

Patients also crave being touched, both physically and emotionally — perhaps to be reminded that they are still living, perhaps because family and friends often distance themselves as a disease progresses toward death. Finally, patients want time, and in most cases, there is some time.

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

End of life care is an important part of a patient's treatment, with the top priority being making them comfortable and at peace. Giving the patient a proper treatment plan, pain medication, complementary therapies and mental health support can help make the end of their life more comfortable.

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

Priorities for care of the dying person
  • Recognise. If someone's health unexpectedly gets worse we should consider if there is a cause that can be reversed. ...
  • Communicate. Remember that open, honest and sensitive communication is key. ...
  • Involve. ...
  • Support. ...
  • Plan & do.

What are 4 goals for end of life? ›

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 does a dying person think about? ›

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. This can be unsettling, and loved ones may not know how to respond.

What matters most at the end of life? ›

We know, for example, from research what's most important to people who are closer to death:comfort; feeling unburdened and unburdening to those they love; existential peace; and a sense of wonderment and spirituality. Over Zen Hospice's nearly 30 years, we've learned much more from our residents in subtle detail.

What are the main aims of end of life? ›

End of life and palliative care aims to help you if you have a life-limiting or life-threatening illness. The focus of this type of care is managing symptoms and providing comfort and assistance. This includes help with emotional and mental health, spiritual and social needs.

What are the spiritual needs of a dying person? ›

Researchers dedicated to understanding the spiritual needs of the dying have described several important goals of spiritual care. These include hope, meaning, forgiveness, love, reconciliation, gratitude, awe, humility and surrender.

Is it okay to leave a dying person alone? ›

It is the goal that no one dies alone. But believe it or not, it is a choice and the hospice philosophy recognizes and celebrates that choice. Hospice staff and volunteers can attest to the dying choosing when they will die. People working with the dying are aware that some wait to be alone to die.

What happens 2 weeks prior to death? ›

During 1 to 2 weeks before death, the person may feel tired and drained all the time, so much so that they don't leave their bed. They could have: Different sleep-wake patterns. Little appetite and thirst.

What is a drip for end of life? ›

It is important that the dying person and those important to them are aware that the benefits of giving assisted hydration are for relief of distressing symptoms of dehydration and that fluids are not being administered to prolong life, except when there is uncertainty about whether the person is dying or there is ...

What are the 7 Cs of end of life care? ›

The analysis was deductive based on the key tasks of the GSFCH, the 7Cs: communication, coordination, control of symptoms, continuity, continued learning, carer support, and care of the dying.

How to monitor the dying person? ›

Blood pressure, body temperature, heart rate, and other vital signs are still important to keep track of, even when the patient is not longer being treated.

What are the 3 most common causes of death later in life? ›

This includes cardiovascular diseases, cancer, and chronic respiratory diseases. They tend to develop gradually over time and aren't infectious themselves. Heart diseases were the most common cause, responsible for a third of all deaths globally.

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

Withholding and withdrawing treatment

Ethical dilemmas approaching the end of life commonly revolve around decisions to withhold or withdraw interventions or treatment.

What are the 3 principles of death and dying discuss? ›

Basic Principles of Death and Dying

Death is typically understood to possess three basic principles: Permanence: people cannot come back to life after they die. Universality: all living things will eventually die. Non-functionality: The functions of a living being cease after death.

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