What Matters Most to You? Helping Patients, Families through the Final Stages of Illness

BY ANKUR BHARIJA, M.D.
MMS COMMITTEE ON GERIATRIC MEDICINE

MMS Launches Brochure to Help Patients, Families Make Advance Care Choices

Ankuir Bharija, MD
Ankur Bharija, M.D.

Every patient deserves to make choices about their advance care planning. Their hopes, fears, and goals matter to make the best choice for the care they receive. Research suggests that the care Americans get near end-of-life is not necessarily the care they want, unnecessarily adding to their suffering. According to a CNN poll, 70 percent of Americans said that they prefer to spend the last moments of their life at home. Yet, 2005 CDC data showed that more than 50 percent of Americans die in the hospital.

As physicians we want to foster a culture where conversations about the patients’ current and future health care goals are embedded into their care.

When Is the Time Right for the Conversation?

Planning Ahead What Are Your Options BrochureThere is never a wrong time for the right conversation, but there’s a critical point as patients age and develop multiple chronic, serious, or advanced diseases when patients’ preferences and goals often change from just living longer to living well with illness and to, perhaps, dying well. At that point, population-based goals of longevity for healthy adults change to person-based goals of better quality of life, symptom control, family support, and care at home for those living with serious illness and/or with advanced age and frailty. We need to look at the big picture, their disease trajectory and symptom burden, their prognosis and quality of life.

The MMS Committee on Geriatric Medicine has developed What Matters Most To You?, a brochure for patients and their families to help physicians and patients begin these difficult conversations about end-of-life care. It introduces various advance directives, including the Massachusetts Health Care Proxy form (for everyone 18 years and older) and Massachusetts MOLST (Medical Orders for Life Sustaining Treatment) for those with serious advanced illness at any age or the medically frail and very elderly. The brochure, available at www.massmed.org/advancecareplanning, also includes a list of important resources for those caring for adults with serious illness.

Why and When Palliative Care?

The brochure discusses asking for palliative care when afflicted with serious illness, whether temporary or long-term. Palliative care is not only for those close to end-of-life, but is most helpful as an extra layer of support at the onset of a serious, life-limiting diagnosis or whenever medical problems and associated symptoms start affecting their quality of life and function.

Yes, having the conversation requires time and proper training. Collaborating with interdisciplinary support staff and directing families to online resources such as theconversationproject.org may be helpful. Communication skills for these types of conversations are very important and are as much an art as it is a science, but are learnable.

While we may never have enough specialist palliative care providers for the estimated six million Americans who could be candidates for it, we can try to ensure that the care each of us delivers is concordant with the patient’s and family’s well-articulated goals — keeping in mind their hopes and fears.

If physicians don’t talk about these issues with their patients, who will?

Special thanks to my colleagues on the Committee on Geriatric Medicine who worked on this brochure, Eric Reines, M.D.; Janet Jankowiak, M.D.; Melissa Loh Kah Poh, M.D.; Eliza Shulman, D.O.; Beth Warner, M.D.; Mark Yurkofsky, M.D.; and Candace Savage, MMS public health outreach manager.

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