This is a difficult topic to address but an important one all the same. As a healthcare provider you will inevitably encounter patients with a terminal illness and who are concerned with preparing for death.
Most of us have had a friend or family member suffer from a terminal illness. Having competent medical information about one’s options and the likely consequences is the essential starting point to deciding the best course of action for one’s life.
This post forms part of our guide on the relationship between healthcare providers and patients. The purpose of this guide is to assist you in providing the best care with the deepest understanding and empathy for a patients concerns and worries.
This guide first appeared on Partnership for Healthcare.
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: “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 enables you to name a specified person to make healthcare decisions for you in line with 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 provided by a healthcare provider to provide relief from pain and other debilitating symptoms of terminal or serious illness. The goal of palliative care is to relieve symptoms, including pain, and providing the best possible quality of life for patients and families. Palliative care 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.