Understanding Your Rights

by Charlene Thurston, RN, ANP, Program Director, from the Spring 2018 Currents Newsletter
By now, most people are aware of the fact that they have a right to forego emergency attempts at life-extending measures like cardio-pulmonary resuscitation (CPR) if they have a cardiac arrest. DNR orders (Do Not Resuscitate) are very familiar in the public jargon, and many people have strong feelings about what their wishes would be. We’ve written in past newsletters about the importance of having advance directives like living wills and health care proxies, and of discussing one’s wishes and completing a MOLST (Medical Orders for Life-Sustaining Treatment) with one’s physician or other clinician when living with a serious illness. People are also often aware of their right to have a respirator discontinued, and many family members have been faced with the decision of “pulling the plug” when a loved one has been on a respirator but it was felt that there was minimal chance of meaningful survival. However, people often do not really understand that they have a right to stop any treatment, even medications or oxygen, if they feel that their quality of living is so poor that they’d rather not continue living.

Over the past year, we’ve had a few patients express their wish that they could move to a state with so-called “death with dignity” acts. In these states (Calif., Colorado, Oregon, D.C., Vermont, Washington), it is legal for a physician to prescribe a lethal dose of medication that can be taken by a resident with a terminal illness and a life expectancy of 6 months or less. In Massachusetts and in several other states, this is not legal, but bills are in committee.

However, patients with serious illness who are dependent upon life-sustaining medications, oxygen, tube feedings, dialysis, pacemakers, defibrillators, etc. should be aware that they do not need to move to a state with such acts. They already have the right, in any state in which they reside, to stop treatments without which they could not live. There are no laws which compel competent adults to accept treatment or continue treatment. If living with such illness has become intolerable, you should discuss this with your family and health care proxy, and discuss with your physician what your values and goals are, what medications and treatments you’re taking, what you might experience if such treatments were discontinued, and what further treatment you would or would not want.

When I was thinking about various patients we’ve cared for over the years, I thought about how some patients would cling to life, even one in which they were gasping for breath during much of the day, whereas others were wishing that death would take them, even when they seemed to have much less physical suffering. I’m not speaking here of people who are depressed and feeling suicidal. I’m also not talking about people with cancer who are deciding whether or not to accept further aggressive treatment, although much of this may apply. I’m speaking here of people with very advanced chronic illness whose illness has left them with such a limited existence that life has no meaning. And therein lies the crux of the issue – some people may continue to find meaning and purpose, even in the midst of extreme suffering or minimal ability to engage in life, while others may not; for them, living is essentially over.

Many books have been written about the topic of finding meaning. Man’s Search for Meaning, by Viktor Frankl, a survivor of an Auschwitz concentration camp, is one of the most well-known. One contemporary author I came upon was Emily Esfahani Smith, who wrote, The Power of Meaning, and who also gave a TED Talk on YouTube called, “There’s More to Life than Being Happy.” She states that, although happiness may come and go, it is really a lack of meaning that can make life feel empty, and goes on to describe four pillars that bring life meaning. Belonging (feeling part of a family or community), purpose (using our strengths to serve others), transcendence (connecting with something that lifts us beyond our everyday world), and storytelling (the story we tell ourselves about ourselves). She goes on to talk about how many people who have suffered tremendous hardship, have been able to find meaning by turning their hardship into a positive endeavor, and how this purpose then sustains them. How people can often change their story from one that brings them nothing but sadness and depression, to one of growth and fulfillment – the redemptive story.

In our work with patients with life-threatening illness then, I want to be sure patients are informed about their right to discontinue treatments if they are subjected to much suffering and misery and if life seems futile. If your decision is to stop life-sustaining treatment, you have a right to request comfort measures so that you will not suffer when those treatments are discontinued. Such comfort measures include medications to decrease pain, shortness of breath, or other symptoms, as well as physical, emotional, and spiritual support for yourself and your family throughout the end of life. If care is needed in the home, palliative care and hospice care are available to help you, and if care is needed in the hospital or nursing home, our palliative care team is available to follow you there as well.

But I also want to encourage patients to really examine their lives and explore possible avenues of fulfillment before making such decisions. It is incumbent upon us as healthcare providers to help them in both circumstances. To help them truly examine their lives and explore opportunities for growth and meaning, and, also, to ensure that they are supported and kept comfortable if they decide to stop treatment and allow natural death.

Funded by the Palliative & Supportive Care of Nantucket Foundation, the Palliative & Supportive Care Program is operated as a department of the Nantucket Cottage Hospital, which is an affiliate of Massachusetts General Hospital, and a member of Partners HealthCare. Palliative & Supportive Care of Nantucket is a specialized health care program dedicated to providing excellent physical, psychological, social, and spiritual care to persons with life-threatening illness and their families.

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