"Is my brother dying? I think I need a straight answer." --Phyllis Hunte
Norman Smellie, who has always told his doctor that he wants everything possible done to stay alive, has begun to refuse some treatments. His sister, Phyllis, Norman's health care proxy, faces a great deal of uncertainty about how to proceed with his care. Watch the video and explore resources for conversations around end-of-life care.
The time near the end of life can be full of uncertainty for patients and for families. For most people with life-limiting illnesses, the line between "living" and "dying" can be hard to define. We can live for many months -- even years -- with diseases that were once immediately fatal. So living with a serious illness also means living with a great deal of doubt and confusion.
Reconsidering Care Preferences
It is not always easy to navigate all of your choices during the course of your treatment, or especially to make decisions about end-of-life care. Through advance care planning, you may have begun the processes of expressing your wishes, defining your care preferences and designating a health care proxy. Where once you wanted "everything" done or "nothing" done, you or your health care proxy may need to reconsider what that means given your current situation. And when the moment comes to make medical decisions about care at the end of life, you may find your wishes have changed.
- As your illness worsens, your wishes and preferences are likely to change. It is best to have ongoing conversations, giving you an opportunity to change course.
- Talk to a doctor whom you trust and respect, someone with whom you can communicate openly, honestly and frequently. This may be your primary care doctor, social worker or medical ethicist. Many hospitals have palliative care specialists who can also help.
- Let the doctor know how you cope with uncertain and difficult situations. Do you like to have a lot of information, or does that make you worry more? Does focusing on the problem at hand help you, or would you rather be distracted from it?
- Think about including family in conversations with your doctor so that they know what choices you face. Family members can take notes, especially when information is complex or difficult to hear. Then you can review their notes and frame questions in future visits with your doctor.
- Make sure to involve your health care proxy -- the person you designate to make decisions for you in the event that you cannot do so yourself -- in these conversations.
Downloadable Resource: Caring Conversations: Making Your Wishes Known for End-of-Life Care (PDF) from the Center for Practical Bioethics
You may come to a point where you or your health care proxy will have to make decisions about whether you want to pursue certain treatments, to forgo them or have them stopped.
- Such treatments can range from going on a ventilator to using antibiotics, from having a feeding tube inserted to receiving chemotherapy. In some cases, these treatments are pursued because there is a real chance that your condition will improve; in other cases, even if you are dying, such treatments offer a way to keep you comfortable.
- Sometimes treatments simply add burdens, and doctors and patients undertake them mainly to avoid confronting the facts.
- Discussing the treatment plan involves weighing the burdens and benefits of treatment, or talking to your doctor realistically about what you can expect to gain -- or lose -- by having such treatments started.
- Many people find it difficult to stop treatments once they have begun, but you should be aware that, legally and ethically, stopping treatment is always an option.
Family members, too, may have concerns and questions about when to stop treatments for their loved ones, and despite advance care planning, they may find it difficult to make decisions about care when they are no longer trying to stop the progression of the disease.
- Will my loved one be uncomfortable?
- Will I be able to tell if he is more or less uncomfortable later?
- Will my loved one be in pain?
- What is likely to happen as my loved one dies?
- Is hospice care or palliative care an option?
- How do other people with this disease die?
Palliative Care Supports
One option for support is to seek hospital-based palliative care. Palliative care involves a team of experts who aims to improve the quality of life of patients facing life-threatening illness and their families. It is available to patients from the time they are diagnosed with an advanced, serious illness until the time of their death and can be used in conjunction with curative treatments and continued after treatment has ended.
Palliative care treatment and support involves:
- Providing relief from pain and other symptoms
- Helping patients and families to understand, consider and make medical decisions
- Coordinating care with a variety of other providers throughout the health care system
- Guiding patients and families in developing a treatment plan that enables them to live well and to pursue goals based on their diagnosis, needs, hopes and concerns
- Providing emotional and spiritual support and guidance
Palliative care is an interdisciplinary approach that includes a palliative care physician or nurse who leads the team and who can work with your other doctors to develop a treatment plan and coordinate your care. The team may also include health care providers from many different disciplines, such as chaplains, social workers, pharmacists, nutritionists, occupational and speech therapists, and others who are specially trained to support patients throughout the cycle of their disease from diagnosis for as long as the disease progresses.
For Doctors, When Patients Face the End of Life
Not only is it difficult for families to know that a loved one is near the end of life, but it is sometimes difficult for doctors, too, to know or predict when death is near. Communicating with patients in a compassionate and empathetic way can help them to cope with this uncertainty.
There are many professional education resources to help doctors learn how to communicate with their patients and families coping with serious or life threatening illness. In these situations, Dr. Robert Arnold, director of the Palliative Care Service at University of Pittsburgh Medical Center, recommends a few pointers for doctors in his OncoTalk guide for oncologists:
- Recognize how uncertain this time is for families, and how frightening it can be. Ease their fears by reaffirming your commitment to them. Let them know that you will stick with them through this journey and be willing to do what it takes to help them navigate the care system. Respond to phone calls and questions. Dr. Arnold says that being willing to stay with families through difficult stages is a real sign of commitment and caring.
- Respond to emotions, but especially to hope. Hearing that treatments are no longer working can make patients and families feel as though they are giving up hope. Help them to see that they can hope for other outcomes -- for pain relief, for good days, for time together, for opportunities to find meaning and purpose. At the same time, acknowledge and respect the losses they are facing.
- Learn how to listen -- know how important it is, sometimes, to say nothing. Allow the family members time and space to express their wishes and fears, hopes and concerns. Dr. Arnold advises doctors to invite conversation, but not to force it. He suggests starting with getting a sense of what the patient and family know about their illness before giving more information. Asking "Tell me what your doctors have told you" is an effective way to start this conversation. Another good approach to opening up dialogue is to ask, "Could you tell me what you are thinking now?" One way to get to these issues is to ask patients, "What brings you pleasure or enjoyment?," and then ask, "What is it that worries you about how things are going?" The patient's answers are likely to provide insights into how to move ahead, and understanding with regard to what anyone can do to provide the support and resources the patient and family need.
People with advanced illness are likely to face many life-sustaining treatments options in addition to decisions about stopping treatments. Decision about whether to use or to withdraw life-sustaining supports can be fraught with difficulty for many patients and families.
For More Information
- Aging With Dignity
Aging with Dignity is a national nonprofit organization with a mission to affirm and safeguard the human dignity of individuals as they age and to promote better care for those near the end of life.
- American Academy of Hospice and Palliative Medicine
AAHPM supports a site just for patients, with extensive information about palliative care, what it is and what it can offer, and when to seek hospice treatment. A companion site for physicians, offers professional information to the academy's membership of more than 3,500 palliative medicine physicians.
- Caring Connections
A program of the National Hospice and Palliative Care Organization (NHPCO), Caring Connections is a national consumer and community engagement initiative to improve care at the end of life.
- Center to Advance Palliative Care
CAPC is a leading resource for those seeking to develop, implement and run palliative care programs, offering toolkits, education and information for health care professionals through its website. For patients and families, CAPC offers a comprehensive resource.
- Center for Practical Bioethics
In addition to its Caring Conversations workbook, CPB offers a variety of publications, videos and audiotapes designed to enhance ethics education and promote discussion of ethics issues.
- Compassion and Support at the End of Life
A community-based initiative with a wealth of resources for people facing the end of life, including information on how to talk about death and dying and how to know when death is near.
- Dying Well
Developed by Dr. Ira Byock, a palliative care expert and advocate, this site offers resources and insights on living well with advanced illness.
- Growth House, Inc.
This site features free access to more than 4,000 pages of high-quality educational materials, both for the general public and for health care professionals, about end-of-life care, palliative medicine and hospice care, including the full text of several books.
A series of learning modules for professional medical education on improving oncologists' communications with patients and families. Authors include Drs. Anthony Back, Robert Arnold, Walter Baile and James Tulsky; and Professor Kelly Fryer-Edwards, Ph.D.