By Charlene Thurston, ANP, Program Director – from Currents Fall 2016

In past newsletters, we’ve discussed the fact that all people over 18 years of age should choose a Health Care Proxy in an advance directive, and we’ve encouraged people to have conversations with their families and physicians about their wishes if facing a life-threatening situation. For the educational article in this edition of our newsletter, we’ll focus more specifically on the importance of advance care planning for people who are already dealing with a serious illness like an advanced stage of cancer, heart disease, lung disease, kidney disease, dementia and other neurologic disease, etc.

When patients have such serious illnesses, it’s important for them to plan with their physicians how much aggressive treatment they’d want as their disease advances, so that their health care team will know how to proceed in a manner that honors their wishes. It’s particularly important to have such information available at times of crisis, when a trip to the emergency department or admission to the hospital will have patients being cared for by physicians who very likely will not be familiar with them. Without clear and readily available directions for what patients want, or don’t want, for aggressive treatment, full emergency procedures will be implemented. If this conforms to what the patient desires, all is well, but if it does not, it creates disruption and turmoil for the patient and his or her loved ones. The goal in having plans in place ahead of time is to have the treatment that’s provided be aligned with the patient’s wishes.

Though most patients assume that their physicians will tell them what they need to know when the time is right, when it comes to planning for what should happen when serious illness progresses, many physicians are often hesitant about starting the conversation due to concerns about distressing their patients. However, there’s a great effort now being made by such leaders as Dr. Atul Gawande and Dr. Susan Block connected with Harvard Medical School’s Center for Palliative Care and Ariadne Labs, to educate physicians and other practitioners about the value to patients of having such discussions. They have developed the “Serious Illness Conversation Guide,” which can be used to help physicians learn from their patients what’s important to them, and, on that basis, make recommendations that meet their patients’ values, goals, and wishes.

In case you’d like to think about your own situation, we thought we’d list the questions from the guide, so that you could think about your own values and wishes, and, if desired, initiate discussions with your own physician.

Questions to ponder:
• “What is my understanding of my illness now?”
• “What would I like to know about my illness and what lies ahead?”
• “If my health condition worsens, what are my most important goals?”
• “What are my biggest fears and worries about the future with my health?”
• “What gives me strength as I think about my future with my illness?”
• “What abilities are so critical to my life that I can’t imagine living without them?”
• “If I become sicker, how much am I willing to go through for the possibility of gaining more time?”
• “How much does my family know about my priorities and wishes?”

We encourage patients to think about these issues and any other questions or thoughts they’d like to share, and to request an appointment with their primary care physicians or primary specialist, who know them best, to discuss them and to create a plan for future care. After discussing the information, your physician should be able to understand more clearly what’s important to you and make recommendations of care that best meet your goals. The plan should be documented in your medical record, and, if desired, a MOLST form can be created, with a copy for you and for your medical record. MOLST stands for Medical Orders for Life Sustaining Treatment, and is a set of doctor’s orders which can be used in emergencies to direct your care.

Remember that the purpose of this planning is to help patients think about their situation and to help them engage in discussions with their physicians about the best way to proceed. Ultimately, this process will keep patients and families in control and will help health care staff understand your wishes and
provide care that conforms to your wishes. Your primary care physician or, at times, your primary specialist knows you best and can best help you plan for your future treatment. Don’t hesitate to request a special appointment to have this discussion. Also, please don’t hesitate to call upon us at PASCON to discuss this idea further or to request help.

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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