End of Life Planning
Situations of this nature may have prompted you to ask - what would I want if I were suffering from a terminal illness? What would my spouse want? How can we make sure our wishes are followed?
As Jack Evjy, MD, a medical oncologist who serves on the Partnership Board of Directors, has written: “while we may tend to avoid discussing death and dying, particularly among family members, it’s important to have this conversation sooner rather than later. Preparing for one’s final days will allow those days to be filled with as much dignity, respect, and quality of life as possible, especially if the person has a serious or terminal illness. Preparation can also prevent angst, regret and trouble among friends, family and loved ones who may not remember your specific wishes. It should also provide peace of mind that your wishes have been communicated and will be honored.”
Once you have a plan, you should document it. Legal requirements vary by state. Some states allow for advance directives, such as a living will or durable power of attorney. Other states, including Massachusetts, recognize health care proxies, which lets you name a person to make health care decisions for you – according to your instructions – if you cannot do so for yourself.
Some states have started POLST programs. POLST, which stands for “Physician Orders for Life Sustaining Treatments,” is a brightly colored form that is completed on behalf of seriously ill patients by the physician after understanding the patient’s values and goals of care. Unlike an advance directive that is completed by a patient, POLST becomes an actionable medical order that indicates life-sustaining treatment wishes for doctors and nurses. It is portable, meaning that the medical orders follow the patient from one care setting to another. For example, a POLST form might be completed by a physician in a nursing home, but it is recognized and followed by the staff at the hospital when the patient is transferred. (Note: Some states, including Massachusetts, have adopted the term MOLST instead of POLST. MOLST stands for “Medical Orders for Life Sustaining Treatments.”)
If a serious or terminal illness has been diagnosed, you and your loved ones should consider asking your doctor about hospice and palliative care. Palliative care is the medical specialty focused on relief of the pain, stress and other debilitating symptoms of serious illness with the goal of relieving symptoms, including pain, and providing the best possible quality of life for patients and families. Palliative care is not dependent on prognosis and can be delivered at the same time as treatments intended to cure. Hospice care means end-of-life care provided by health care professionals and volunteers who give medical, psychological, social and spiritual support in a variety of settings, including hospital, home and a special hospice facility. The goal of hospice care is to help people who are dying live their remaining days in peace, comfort and dignity and to support families. Hospice care includes palliative care to reduce suffering.
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Provides free resources and information to help people make decisions about end-of-life care and services before a crisis. READ MORE
National Healthcare Decisions Day is a national initiative to encourage patients to express their wishes regarding healthcare. READ MORE
Offers resources on hospice and palliative care as well as advance care planning. In addition, this site features a searchable directory of hospice programs in Massachusetts. READ MORE
Sponsored by the Center to Advance Palliative Care, the site provides information for patients and families about palliative care and about which hospitals have palliative care programs. READ MORE