Should I stop life-prolonging treatment?
Introduction
This information will be helpful if you have a life-limiting illness or disease and are considering stopping all life-prolonging treatments, which are used in an attempt to cure or slow the progression of your disease, and instead focus on pain relief, comfort, and quality of life until death occurs naturally.
Key points in making your decision
Several factors may impact your decision to stop life-prolonging treatments, including:
- The type of illness you have. If you are diagnosed with a serious illness, curative treatment options may be available. Certain diseases, such as skin cancer, testicular cancer, and cervical cancer, are often cured with appropriate medical treatment. Other serious illnesses, such as diabetes and AIDS, cannot be cured but can be managed successfully for many years. Conversely, some illnesses are more aggressive and life-limiting.
- Your treatment options. Many medical treatment options offer the chance of curing a disease with little impact on the quality of your life. However, other treatments may prolong your life but may be associated with side effects that drastically decrease the quality of your life.
- Your age and other health conditions. Older people with multiple health problems may be more likely than relatively healthier younger people to choose treatments that focus on keeping them comfortable rather than keeping them alive as long as possible.
Medical Information
What kinds of treatment focus on symptom relief and comfort at the end of life?
Hospice palliative care is a comprehensive program that helps manage symptoms (such as pain) at the end of life. This kind of care focuses on improving quality of life when treatment to cure a serious illness or prolong your life is no longer realistic. For more information on this type of care, see the topic Hospice Palliative Care. Doctors and other health care workers involved with hospice palliative care help you identify your treatment choices, identify goals for the end of your life, and offer emotional and spiritual resources if you wish to pursue them.
Hospice palliative care programs also support loved ones involved in your care by offering services such as home visits, breaks for caregivers (respite care) and grief counselling.
Once you start a hospice palliative care program, your treatment goals change from life-prolonging treatment to focusing completely on your comfort, quality of life, and symptom relief. However, the decision to forego other treatment does not have to be permanent.
Relieving your physical symptoms
Hospice palliative care at the end of life attempts to control many of the symptoms associated with serious illness and the dying process. Hospice palliative care sometimes can be combined with life-prolonging treatment. However, at some point, treatments aimed at prolonging your life may detract from the palliative focus on comfort and quality of life. You may decide that treatments designed to prolong your life are more likely to add pain and will not prolong your life in a meaningful way.
If you choose to focus completely on hospice palliative care, your doctor will concentrate on relieving your symptoms such as pain, nausea, shortness of breath, fever, and loss of appetite. In order to help keep you comfortable, your doctor will ask you to describe your symptoms. Questions may include:
- Are you having pain, nausea, or both? Do you have more than one pain? Is your pain sharp or dull? What other symptoms are you having?
- Where do you feel pain or other symptoms? For example, are you having pain in your abdomen or throughout your body?
- When do your symptoms usually occur? For example, if you are having shortness of breath, does it develop after activity? Is it constant?
- What makes your symptoms worse? Activity may aggravate your pain, as may sitting in one position for a long time.
- What makes your symptoms better? Rest? Taking your pain medication routinely?
Describe your symptoms as clearly as you can. You may find it helpful to keep a diary or chart of your symptoms so that you can discuss concerns with your doctor.
Estimating your prognosis
An important aspect in choosing your medical care at the end of life involves making a reasonable attempt to estimate your prognosis, the amount of time you have left to live. Your prognosis will help you and your doctor evaluate the appropriateness of certain medical treatments. For instance, if your doctor feels you have several months to years to live, certain medical therapies may help you maintain comfort and improve the quality of your remaining days. On the other hand, if you are expected to live for only a few weeks, certain medical treatments, such as surgery, may cause more pain and side effects than you are willing to endure.
Understanding your prognosis is important to help you and your family prepare for dying. Having a sense of how much time you have to live may help you to review your life, your accomplishments, and your regrets. It may also help you to focus on saying good-bye to your family and to nurture or complete relationships.
Although it is sometimes difficult for doctors to estimate prognosis, you should expect clear and sensitive answers to your questions. It may be helpful to see another physician for a second medical opinion when prognosis is not clear.
Identifying your treatment goals
As the end of life nears, your doctor will help you identify your treatment goals and make sure your medical care fits in with your preferences. This communication may help you decide whether you want to continue with or stop receiving life-prolonging treatment. For example, while talking about your treatment options with your doctor, you may discover that your only wish is to keep your pain at a tolerable level. Or you may identify several goals, such as staying active as long as possible and living to see a child graduate from university, that point more toward pursuing or continuing with life-prolonging treatments.
Managing your practical, emotional, and spiritual needs
It is normal to experience a wide range of emotional and spiritual issues as death approaches. For example, you may have concerns about how to manage your finances or worry about how your condition affects your loved ones.
Regardless of the focus of your treatment, whether it be on life-prolonging treatments or on those to relieve symptoms and keep you comfortable, many resources are available to help you address personal issues. The difference may be in ease of accessing help.
If you continue with life-prolonging treatments, you may need to be proactive with your doctor and other health professionals. Ask about a support group for people with a life-limiting disease. Find out about psychologists or psychiatrists that specialize in end of life issues. Contact or seek a financial counsellor to help manage your accounts. You may also want to explore issues about the meaning and purpose of your life, in which case a spiritual advisor, a family member, or a friend may help.
If you enroll in hospice palliative care, most of these services are easily accessed because they are offered or addressed as part of the program. Also, additional services usually are available, such as grief counselling for family members.
What are the benefits of stopping life-prolonging treatment and focusing on symptom relief and comfort?
Hospice palliative care focuses on keeping you comfortable and providing you with the highest quality of life possible until you die. For many people, this focus on medical care allows time and energy to be spent on emotional and spiritual needs at the end of life. Also, services can be pursued to support the needs of your family, friends, and/or caregivers.
Care focused on symptom relief and quality of life often involves the support of several health professionals, such as a hospice palliative care team. Some of these caregivers can offer resources to help you address difficult emotional issues, such as broken relationships, financial issues, or a fear of dying. Although challenging, facing these issues usually will help you and your family resolve problems.
What are the risks of stopping life-prolonging treatment and focusing on symptom relief and comfort?
You may fear that you will not receive the best available medical treatment if you stop pursuing treatments that prolong your life or attempt to cure your condition or slow its progression. Focusing on pain relief and symptom management does not mean that you will not have access to your doctor or to excellent care. Your doctor still cares about you and your illness and will not abandon you because you have decided to focus on comfort. Also, curative treatment or treatment to prolong your life remain options. If your condition changes, you can shift back to curative types of treatments.
What are the risks of continuing with life-prolonging treatment?
Choosing to continue with treatments aimed at prolonging your life may present several problems.
If communication is not clear between you and your loved ones and your doctor, and in the event you cannot communicate your wishes, your doctor and loved ones may choose medical treatment that does not comply with your wishes. If you choose hospice palliative care, your personal wishes are discussed and communicated clearly to your loved ones and health professionals.
While medical treatment remains focused on prolonging your life, you may miss the opportunity to enjoy valuable time with friends and family because your treatment may take up most of your energy. You may also experience negative side effects from life-prolonging treatment. This can interfere with your quality of life and your ability to spend time with loved ones.
If you need more information, see the topic Care at the End of Life or Hospice Palliative Care.
Your Information
When you are diagnosed with a serious illness, your doctor will discuss treatment options with you. Your illness may have a high likelihood of being cured with medical treatment. After discussing treatment options and the possibility of cure, you may choose to actively pursue treatment aimed at curing your illness and prolonging your life.
However, at some point in your illness, possibly soon after diagnosis or else after having tried curative treatment for a while, you and your health professional may agree that a cure is extremely unlikely. Your health professional may then discuss whether your main goal is to continue to find ways to prolong your life or to direct treatment towards having the highest possible quality of life.
Your choices are:
- Receive medical care aimed at prolonging your life.
- Receive medical care focused on controlling the symptoms of your disease and improving your quality of life, without prolonging your life
The decision about whether to stop life-prolonging treatment takes into account your personal feelings and the medical facts.
Reasons to stop receiving life-prolonging treatment
Reasons to continue receiving life-prolonging treatment
- A cure for your illness is not likely, and you want to pursue care that relieves your symptoms without curing your illness.
- You wish to avoid treatments that, though they may prolong your life, may have side effects that drastically decrease the quality of your life.
- You want your treatment to focus on relief of your suffering and to address your physical, emotional, and spiritual needs.
Are there other reasons you might want to stop receiving life-prolonging treatment?
- Your illness is likely to be cured with medical treatment.
- You wish to pursue treatments that may prolong your life regardless of their effect on quality of life.
- You do not wish to focus on difficult emotional issues, including broken relationships, financial issues, or a fear of dying.
Are there other reasons you might want to continue to receive life-prolonging treatment?
These personal stories may help you make your decision.
Wise Health Decision
Use this worksheet to help you make your decision. After completing it, you should have a better idea of how you feel about receiving curative treatments. Discuss the worksheet with your doctor.
Circle the answer that best applies to you.
I have been diagnosed with a life-limiting illness, and I want to receive treatment that could possibly cure my disease (curative treatment). Yes No NA* A cure for my illness is not likely, and I am comfortable with receiving care designed solely to manage the symptoms of my illness until death occurs naturally. Yes No NA Medical treatments offer a reasonable chance of curing my illness and prolonging my life. Yes No Unsure I have other health conditions that may impact my decision to choose curative treatment or care for symptom management. Yes No Unsure I have important relationships that need strengthening. I have broken relationships that need repair. Yes No Unsure I am willing to accept help from support services, such as hospice palliative care, that are commonly offered in care that focuses on symptom management. Yes No Unsure *NA=Not applicable
Use the following space to list any other important concerns you have about this decision.
What is your overall impression?
Your answers in the above worksheet are meant to give you a general idea of where you stand on this decision. You may have one overriding reason to receive or not receive life-prolonging treatment.
Check the box below that represents your overall impression about your decision.
Leaning toward stopping life-prolonging treatment
Leaning toward continuing life-prolonging treatment
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| Author: | Carrie Henley Sabra L. Katz-Wise | Last Updated: November 21, 2006 |
| Medical Review: | Tom Bailey, MD - Family Medicine Adam Husney, MD - Family Medicine Ira Byock, MD - Palliative Care | |
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