As a physician who has specialized in medical oncology for four decades, I know well how death and dying can affect patients and their families. End-of-life issues are never easy to discuss or experience, but they reach every one of us at one time or another, whether as a patient, loved one, or family member.
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.
Most people recognize the need for a will, to ensure that possessions are left according to one’s desires. Yet other important documents should be completed as well, and terminology is important. Here are some of the basics, courtesy of the Hospice & Palliative Care Federation of Massachusetts.
‘Advance directives’ is a general term referring to instructions about your future medical care, should you become unable to communicate those instructions yourself. Typically, directives include a living will, durable power of attorney, and health care proxy.
A living will, variously called a ‘directive to physicians’ or ‘declaration of health care,’ specifies the kind of life-saving or life-sustaining care you want or don’t want in the event you become incapacitated or terminally ill. While Massachusetts considers this kind of document good evidence of a patient’s wishes, it’s not legally binding in the Commonwealth.
A durable power of attorney for health care is a legal document appointing someone to act on your behalf in deciding on medical treatments in case you become incapacitated.
A health care proxy is legally binding in Massachusetts and lets you name a person of your choosing to make health care decisions for you — according to your instructions — if you cannot do so for yourself. A health care proxy is the critical first step to ensure that your care will be consistent with your beliefs and values and that your final wishes will be fulfilled.
A values history form, though not a legal document, states the values and beliefs that matter most to you and can provide important direction for others who may have to make decisions for you.
If serious or terminal illness exists, preparations should include an examination of hospice and palliative care, a medical specialty dedicated to relieving the pain and suffering of patients and providing them with the best quality of life possible.
Offering a customized approach to care, these programs include medical, social, and health specialists working as a team with the primary care physician, creating an individualized treatment plan that benefits patients and families. Hospice and palliative care can be provided when the goal of care changes from cure to comfort during a person’s illness; it includes expert treatment of pain, guidance with treatment choices, and emotional support for the patient and family. Hospice care also provides bereavement support after a loved one’s death.
For more on end-of-life issues, visit the Hospice & Palliative Care Federation of Massachusetts at www.hospicefed.org. This comprehensive site includes clear explanations on many topics, including advance care directives, pediatric programs, advice on choosing a hospice, and information for families. It also includes a list of hospices and palliative care programs throughout the state, access to a health care proxy form, and instructions on how to complete it.
Some other valuable sites include www.nationalhealthcaredecisionsday.org, a national initiative on health care decision-making, and www.lawlib.state.ma. us/healthproxy.html, the Massachusetts Trial Court Library.-
Dr. Jack Evjy is Medical Affairs advisor for the Mass. Medical Society and a member of the Mass. Health Care Quality and Cost Council’s End of Life Expert Panel.