Discussing a greater number of end-of-life care topics increases the likelihood of concordance between patient-reported goals of care and the goals documented within their medical records, and increases patient satisfaction with care. 16 Indeed, in a recent US study of patients with chronic obstructive pulmonary disease (COPD), those who reported having end-of-life care discussions were twice as likely to rate the quality of their care as the ‘best imaginable’. 13 Furthermore, end-of-life care discussions also influence subsequent treatment decisions: a recent prospective study of over 1000 US patients with cancer found that end-of-life care discussions prior to the last 30 days of life were significantly associated with fewer aggressive medical interventions. 17 Although aggressive medical interventions may be appropriate for, and preferred by, some individuals, patients' quality of life and relatives' bereavement adjustment are reported as significantly better when patients receive fewer aggressive medical treatments towards the end of life. 14 Findings across each of these studies are consistent with a recent systematic review of the impact of ACP on end-of-life care, which, across over 100 studies, found evidence of a positive impact in the form of reduced hospitalisations, increased use of hospice and palliative care services, decreased use of life-sustaining treatments and better compliance with patients’ wishes. 18
Full Answer
How to talk to a patient about end of life care?
A Physician's Guide to Talking About End-of-Life Care 1 Initiating Discussion. 2 Clarifying Prognosis. 3 Identifying End-of-Life Goals. 4 Developing A Treatment Plan.
What is end of life care for mental health?
End-of-Life: Managing Mental and Emotional Needs Complete end-of-life care also includes helping the dying person manage mental and emotional distress. Someone who is alert near the end of life might understandably feel depressed or anxious. It is important to treat emotional pain and suffering.
Why are end-of-life care discussions so important?
Why are end-of-life care discussions so important? There is strong evidence of the benefits of end-of-life care communication with patients with life-threatening illness and their families.
What does end of life care look like?
This type of care does not happen only in the moments before breathing ceases and the heart stops beating. Older people often live with one or more chronic illness and need significant care for days, weeks, and even months before death. The end of life may look different depending on the person’s preferences, needs, or choices.
Who should you speak with in end-of-life care?
Encourage your family member to write a letter about his end-of-life wishes to himself, a spouse or partner, or a friend. Practice the conversation with a friend. Don't shy away from disagreements once the conversation starts. The conversation should be an ongoing dialogue, not a one-time discussion.
What is an end of life conversation?
EOL conversation is a common concept for conversations between professionals, patients, and relatives concerning wishes and decisions about the end of life. The aim of these conversations is to give the patient and their relatives the opportunity to decide on their EOL wishes in advance.
How do you discuss end-of-life care with a patient?
Before you begin the conversation about hospice or palliative care, several practical details should be carefully considered:Make time. ... Make space. ... Turn off your cell phone and pager. ... Find out what the patient knows. ... Listen carefully to the patient's response. ... Discover the patient's goals.
What is important to include in the conversation when talking with patients about end of life?
End-of-life discussions, however, must go beyond the narrow focus of resuscitation. Instead, such discussions should address the broad array of concerns shared by most dying patients and families: fears about dying, understanding prognosis, achieving important end-of-life goals, and attending to physical needs.
How do doctors know how long you have left 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.
Why is communication important in end-of-life care?
Good communication of a dying person's prognosis improves their end of life care and the bereavement experience of those important to them. It can help to ensure that the dying person's expressed wishes are considered and to avoid misunderstandings and unnecessary distress.
How do you talk to someone about end-of-life decisions?
How to Talk to an Elderly Parent About End-of-Life DecisionsDon't put it off. ... Complete your own advance directive form first. ... Do your homework. ... Choose the right time and place. ... Plan a great introduction. ... Proceed slowly and gradually. ... Take notes. ... Be persistent.
Should a patient be told he is dying?
When someone may be entering the last days of life, a healthcare professional should tell the patient that they're dying (unless they don't want to know).
How do you start a conversation with palliative care?
Start by asking the patient and family about their understanding of the patient's medical condition. If they understand the condition is not curable, move the conversation forward with phrases such as, “We are in a different place now. Tell me about your hopes, fears, and wishes – what is important to you, now?”
What does end-of-life care mean for people who have cancer?
When a person’s health care team determines that the cancer can no longer be controlled, medical testing and cancer treatment often stop. But the p...
How do doctors know how long a person will continue to live?
Patients and their family members often want to know how long a person who has cancer will continue to live. It’s normal to want to be prepared for...
When should someone call for professional help if they’re caring for a person with cancer at home?
People caring for patients at home should ask them if they’re comfortable, if they feel any pain, and if they’re having any other physical problems...
When is the right time to use hospice care?
Many people believe that hospice care is only appropriate in the last days or weeks of life. Yet Medicare states that it can be used as much as...
What are some ways to provide emotional support to a person who is living with and dying of cancer?
Everyone has different needs, but some worries are common to most dying patients. Two of these concerns are fear of abandonment and fear of being a...
What other issues should caregivers be aware of?
It’s just as important for caregivers to take care of their own health at this time. Family and caregivers are affected by their loved one’s heal...
What are some topics patients and family members can talk about?
For many people, it’s hard to know what to say to someone at the end of life. It’s normal to want to be upbeat and positive, rather than talk about...
How should caregivers talk to children about a family member's advanced cancer?
Children deserve to be told the truth about a family member’s prognosis so they can be prepared if their loved one dies. It’s important to answer...
How does cancer cause death?
Every patient is different, and the way cancer causes death varies. The process can depend on the type of cancer, where it is in the body, and how...
What is the 4 step approach to end of life care?
A pragmatic 4-step approach to discussing end-of-life care is outlined in Table 1. The physician sensitively initiates the discussion so as to create a forum for ongoing dialogue. Subsequent discussion serves to clarify prognosis, identify end-of-life goals, and finally to develop a treatment plan. The 4 steps are progressive; each step provides a necessary foundation for further discussion.
What should end of life discussions address?
End-of-life discussions should address a broad array of issues central to the dying patient and family. Discussions that focus solely on resuscitation fail to recognize important physical and psychosocial concerns.11Most patients, as they near death, contend with similar fears, needs, and desires. Dying patients experience fear of pain, fear of indignity, fear of abandonment, and fear of the unknown.4,11,12Open and direct discussions can ease many of these fears. By involving family members in these discussions, relationships within the family can be strengthened, and can reduce the isolation experienced by the dying person.13–17
What does fearless healing mean?
Fearless healing can mean initiating an end-of-life discussion with a terminally ill patient or discussing a worsening prognosis with a failing, hospitalized patient. Sometimes fearless healing means listening to a patient talk about his physical decline, his emotional and spiritual suffering. Even when curative therapy is no longer effective, the physician's involvement can be a powerful source of comfort.
What does Emanuel mean by fearless healing?
In this context, Emanuel talks about “fearless healing … to heal, one must witness pain without fear. Healers can hear pain, healers give people permission to show pain, healers are not afraid to see pain.”20
What are the goals of a patient when death nears?
Recognize that as death nears, most patients share similar goals; maximizing time with family and friends, avoiding hospitalization and unnecessary procedures, maintaining functionality, and minimizing pain.
Why is it important to encourage a patient to speak openly?
By encouraging a patient to speak openly, the subject of death can become less of a taboo. Patients and families may feel comfortable continuing conversations outside the doctor's office.17When the patient becomes sicker, all parties find it easier to reopen the discussion.7,21
Why is a patient-patient relationship important?
A supportive physician-patient relationship provides an important foundation for end-of-life care. Patients and families speak more openly and are more trusting when they feel their doctor's empathy and compassion. A caring connection can be enhanced by recognizing the stresses that illness imposes on a patient and family.
What is the toolkit for end of life?
The toolkit encourages clinicians to consider their own preferences, assumptions, and biases when talking with patients about their end-of-life wishes. Would you please share a story that illustrates why this is so important?
Why do health care organizations need dedicated leaders?
Health care organizations need dedicated leaders to achieve system-wide quality. Will you be one of them? If you already have top-level responsibility for quality improvement, attend this new professional development course from IHI.
What does the daughter who watched her father get sicker over time know?
The daughter who has watched her father get sicker over time knew that time was getting short, so she was making decisions with that in mind. The son who lived out of state was not aware of how sick their father had gotten. He was making decisions as if their father was less ill and had more time.
How long has the IHI Forum been around?
The IHI Forum is a four-day conference that has been the home of quality improvement (QI) in health care for more than 30 years. Attend this year's conference virtually or in-person.
What are the symptoms of end of life?
Medicines and treatments people receive at the end of life can control pain and other symptoms, such as constipation, nausea, and shortness of breath. Some people remain at home while receiving these treatments, whereas others enter a hospital or other facility.
Why is communication important in end of life?
Research has shown that if a person who has advanced cancer discusses their options for care with a doctor early on, that person’s level of stress decreases and their ability to cope with illness increases. Studies also show that patients prefer an open and honest conversation with their doctor about choices for end-of-life care early in the course of their disease and are more satisfied when they have this talk.
How does a caregiver help a cancer patient?
The patient may have good days and bad days, so they may need more help with daily personal care and getting around. Caregivers can help patients save energy for the things that are most important to them. Appetite changes: As the body naturally shuts down, the person with cancer will often need and want less food.
What is an advance directive for cancer?
Experts strongly encourage patients to complete advance directives, which are documents stating a person’s wishes for care. They also designate who the patient chooses as the decision-maker for their care when they are unable to decide. It’s important for people with cancer to have these decisions made before they become too sick to make them. However, if a person does become too sick before they have completed an advance directive, it’s helpful for family caregivers to know what type of care their loved one would want to receive. More information about advance directives can be found below in the Related Resources section of this fact sheet.
Why is it important to have advance directives for cancer patients?
It’s important for people with cancer to have these decisions made before they become too sick to make them. However, if a person does become too sick before they have completed an advance directive, it’s helpful for family caregivers to know what type of care their loved one would want to receive.
Why is it important for a family caregiver to take care of their own body?
Family caregivers are affected by their loved one’s health more than they realize. Taking care of a sick person often causes physical and emotional fatigue, stress, depression, and anxiety. Because of this, it’s important for caregivers to take care of their own body, mind, and spirit.
Why do people with cancer lose appetite?
The loss of appetite is caused by the body’s need to conserve energy and its decreasing ability to use food and fluids properly. Patients should be allowed to choose whether and when to eat or drink.
What percentage of people think it is important to talk about end of life wishes?
Ninety percent of people think it is important to talk about end-of-life wishes with their loved ones, but only 27 percent have done so, according to a 2021 study published in the Journal of Psychosocial Nursing and Mental Health Services.
Who should be part of the discussion?
Who should be part of the discussion? The list could include not just particular family members but also friends, doctors, caregivers, members of the clergy or others.
What is a power of attorney for health care?
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.
Who is the author of the Conversation Project?
Helping families do that is a key goal of the Conversation Project, which Pulitzer Prize-winning writer Ellen Goodman cofounded in 2010 after serving for many years as caregiver for her mother.
Is planning your final days easy?
Planning your final days is never easy, but it's an invaluable gift to your loved ones. These discussions can be among the richest and most intimate that friends and family share. 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.
Is death a universal experience?
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.
Is it okay to spend time thinking about the conversation?
It's fine to spend some time thinking about the conversation before you dive in. As you prepare, ask yourself these questions:
Why is it so hard to care for a loved one at the end of life?
Providing care to a loved one at the end of life may be more difficult due to COVID-19 restrictions and guidelines. Due to physical distancing guidelines and travel restrictions it may not be possible to provide physical comfort to your loved one at the end of life.
How long do you need to be in care for an elderly person?
Older people often live with one or more chronic illnesses and need a lot of care for days, weeks, and even months before death. When a doctor says something like, “I’m afraid the news is not good.
Why do people feel uncomfortable when they die?
For each, there are things you or a healthcare provider can do, depending on the cause. For example, a dying person can be uncomfortable because of: Pain. Breathing problems.
What is comfort care?
Comfort care is an essential part of medical care at the end of life. It is care that helps or soothes a person who is dying. The goals are to prevent or relieve suffering as much as possible and to improve quality of life while respecting the dying person's wishes. You are probably reading this because someone close to you is dying.
Why is it so hard to talk?
Although understandable, irritability resulting from pain might make it hard to talk, hard to share thoughts and feelings. Breathing problems. Shortness of breath or the feeling that breathing is difficult is a common experience at the end of life. The doctor might call this dyspnea (disp-NEE-uh).
What to say to someone who is dying?
A person who is dying might be worried about who will take care of things when he or she is gone. Offering reassurance—"I'll make sure your African violets are watered," "Jessica has promised to take care of Bandit," "Dad, we want Mom to live with us from now on"—might provide a measure of peace. Reminding the dying person that his or her personal affairs are in good hands can also bring comfort.
What do people need when they are dying?
Generally speaking, people who are dying need care in four areas— physical comfort, mental and emotional needs, spiritual issues, and practical tasks. Their families need support as well. In this section, you will find a number of ways you can help someone who is dying. Always remember to check with the healthcare team to make sure these suggestions are appropriate for your situation.
What is end of life care?
End of life care is support for people who are in the last months or years of their life. End of life care should help you to live as well as possible until you die and to die with dignity. The people providing your care should ask you about your wishes and preferences, and take these into account as they work with you to plan your care.
How long does end of life care last?
End of life care should begin when you need it and may last a few days, or for months or years. 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. Others receive end of life care over many months.
Who provides end of life care?
For example, hospital doctors and nurses, your GP, community nurses, hospice staff and counsellors may all be involved, as well as social care staff, chaplains (of all faiths or none), physiotherapists, occupational therapists or complementary therapists.
How do I find out about end of life care services in my area?
If you are approaching the end of life, or caring for someone who is, and you want to find out about the care and support available, your first step is to speak to your GP or to call the number your healthcare professionals have given you.
What is palliative care team?
Palliative care teams are made up of different healthcare professionals and can co-ordinate the care of people with an incurable illness. As specialists, they also advise other professionals on palliative care.
Why is palliative care called holistic?
This is called a holistic approach, because it deals with you as a "whole" person, not just your illness or symptoms. Palliative care is not just for the end of life – you may receive palliative care earlier in your illness, while you are still receiving other therapies to treat your condition.
How long does it take to die from a dementia?
are generally frail and have co-existing conditions that mean they are expected to die within 12 months. have existing conditions if they are at risk of dying from a sudden crisis in their condition.
Why are end-of-life care discussions so important?
Discussing a greater number of end-of-life care topics increases the likelihood of concordance between patient-reported goals of care and the goals documented within their medical records, and increases patient satisfaction with care. 16 Indeed, in a recent US study of patients with chronic obstructive pulmonary disease (COPD), those who reported having end-of-life care discussions were twice as likely to rate the quality of their care as the ‘best imaginable’. 13 Furthermore, end-of-life care discussions also influence subsequent treatment decisions: a recent prospective study of over 1000 US patients with cancer found that end-of-life care discussions prior to the last 30 days of life were significantly associated with fewer aggressive medical interventions. 17 Although aggressive medical interventions may be appropriate for, and preferred by, some individuals, patients' quality of life and relatives' bereavement adjustment are reported as significantly better when patients receive fewer aggressive medical treatments towards the end of life. 14 Findings across each of these studies are consistent with a recent systematic review of the impact of ACP on end-of-life care, which, across over 100 studies, found evidence of a positive impact in the form of reduced hospitalisations, increased use of hospice and palliative care services, decreased use of life-sustaining treatments and better compliance with patients’ wishes. 18
Which condition is more likely to report having discussions about end of life care?
Patients with non-malignant conditions are more likely to report having discussions about end-of-life care.
What is palliative care?
Palliative care aims to improve the quality of life of patients with life-threatening illness and their families. 1 Although palliative care is applicable and valuable throughout the disease trajectory, 2–5 some of the most challenging discussions in palliative care are regarding end-of-life issues. This can include talking about prognosis, preferences and priorities (eg, life-prolonging and/or palliative treatments, place of care, place of death), as well as hopes and fears regarding dying and death—a process often formally referred to as anticipatory or advance care planning (ACP). In the context of a growing and ageing global population, the demands for palliative care services cannot be met by specialists alone. 6–8 Therefore, the responsibility of communicating about end-of-life care with individuals with life-threatening illness, and those close to them, will increasingly fall to generalist, as well as specialist, providers of palliative care.
What is the importance of communication in end of life care?
Communication about end-of-life care issues, in line with patients' and relatives' readiness and preferences , is essential. This task increasingly will become the responsibility of generalists as well as specialist palliative care providers, and therefore supporting clinicians with this important responsibility should be a priority for practitioners, researchers and policy makers. Although there are potential barriers to opening end-of-life care discussions, it is important to recognise that many of the qualities most valued by patients and relatives are the core, non-specialist communication skills relevant in all fields of medicine—sensitivity and empathy, within holistic, individualised care. It is therefore important not to let the specific sensitivities of palliative care discussions, as highlighted in the literature, deter clinicians from providing these all important opportunities. Sources of support have been developed, and work within this field is ongoing. However, a better understanding of how we define and measure good communication in end-of-life care is essential for future progress.
What are the barriers to end of life care?
This review explores some of the many barriers faced by clinicians in relation to end-of-life care discussions, including prognostic uncertainty, fear of causing distress, navigating patient readiness and feeling unprepared for these conversations . The value of core clinical communication skills, potential strategies for improvement and areas for future research are also discussed. It is essential that clinicians offer patients facing life-threatening illness, and those close to them, the opportunity to discuss end-of-life issues in line with their information and decision-making preferences. With a growing and ageing global population, supporting both generalist and specialist providers of palliative care in this task is key. With careful preparation, fears of undertaking these discussions should not be a barrier to initiating them.
What is the role of a clinician in a life-threatening illness?
However, clinicians have the responsibility (and the core skills required) to offer opportunities for discussion throughout the trajectory of life-threatening illness, in order to empower patients and improve the care experience.
Why avoid end of life discussions?
Uncertainty regarding disease trajectory and prognosis has frequently been cited by clinicians as a cause for avoiding end-of-life care discussions, particularly for non-malignant life-threatening illnesses. 26 As a result, these patient groups are significantly less likely to experience ACP discussions. 31 This was recently explored in a study in Belgium, 27 where general practitioners described their difficulty with recognising the ‘terminal stage’ or a ‘key moment’ in the illness trajectory for people with dementia and heart failure, in order to prompt ACP discussions. Similarly, in a recent study of Dutch patients with organ failure, approximately 70% had not experienced complete discussions about end-of-life care. 32 While uncertainty regarding disease trajectory and prognosis may obscure the ‘best time’ for an end-of-life discussion, it is this very uncertainty which makes provision of opportunities for early discussion so important. Patients and relatives may not choose to take up these opportunities: patients with organ failure, for example, can be particularly reluctant to contemplate death and dying. 33 However, providing opportunities for discussion, for example, when an illness-related change occurs (see above), is crucial. Although discussions were infrequent in Houben's study of patients with organ failure, 32 when they did occur they were rated well for quality (scoring 6–8 out of 10), suggesting anticipation regarding the discussion should not be a reason to avoid one.
