{"id":523,"date":"2017-03-28T11:15:12","date_gmt":"2017-03-28T15:15:12","guid":{"rendered":"http:\/\/www.silvercentury.org\/?p=523"},"modified":"2018-07-11T11:45:34","modified_gmt":"2018-07-11T15:45:34","slug":"asking-the-right-questions-when-time-is-running-out","status":"publish","type":"post","link":"http:\/\/78.142.243.82\/~silvercentury\/2017\/03\/asking-the-right-questions-when-time-is-running-out\/","title":{"rendered":"The Struggle over Medical Decisions at the End of Life"},"content":{"rendered":"

As controversies swirl around end-of-life care, we all need to understand the broader choices that are available. Paula Spencer Scott tackles the subject here. She wrote this article with the support of a Journalists in Aging Fellowship sponsored by the Silver Century Foundation, as part of a program created by New America Media with the Gerontological Society of America. Her article first appeared in the hospice magazine, <\/em>Touching Lives. It was also posted at the New American Media website.<\/em> Scott is the author of<\/em> Surviving Alzheimer\u2019s: Practical Tips and Soul-Saving Wisdom for Caregivers (Eva-Birch Media, 2014).<\/em><\/p>\n

When retired professor Jeffrey Butler suffered a stroke at age 79, the prevailing concept of \u201cthe best medicine\u201d kicked in to save him. He survived, though unable to complete full sentences. During stroke rehab, he developed a painful intestinal hernia. To qualify for the surgery recommended to repair it, a cardiac exam was ordered. When it showed a slow heartbeat, a pacemaker was urged.<\/p>\n

Although Butler had once resisted the device before his stroke, his exhausted wife, Valerie, now deferred to the doctors. The pacemaker was implanted and the hernia was repaired. But the degeneration in his body that had caused his stroke continued. <\/p>\n

For six more years, he endured vision impairment, incontinence, brain hemorrhage, dementia, falls, pneumonia\u2014while his pacemaker-powered heart kept beating. <\/p>\n

\n

Questions Your Doctors 
\n(And You) Should Ask <\/strong><\/p>\n

Medical choices are seldom black or white; they\u2019re shaded by individual goals, needs and preferences. Some people prize physical ability above all, while for others being able to hug and communicate is enough. Some might go for a long-shot treatment regardless of the risks of stroke, disability or dementia. A few broad questions can \u201cunlock transformative possibilities,\u201d suggested Atul Gawande, MD, in his best seller, Being Mortal: Medicine and What Matters in the End <\/em>(Metropolitan Books, 2014). Doctors can learn a lot about patients\u2019 priorities with just these few simple questions, he says:<\/p>\n

What is your understanding of your health or condition?<\/p>\n

What are your goals if your health worsens?<\/p>\n

What are your fears?<\/p>\n

What are the trade-offs you\u2019re willing to make and not make?<\/p>\n

Gawande noted that discussions should be ongoing, because preferences and priorities change as the situation changes. Goals shift. Someone who pursued every possible therapy may reach a point where the side effects collide with other goals, like being comfortable enough to spend time with family, for example. Or they may be more, or less, willing to trade off time for pain. <\/p>\n

If your doctor doesn\u2019t initiate such conversations, it\u2019s up to you to open the door for them, says Katy Butler in Knocking on Heaven\u2019s Door. <\/em>\u201cThe system is set up so that treatment after treatment will be offered until someone says enough,\u201d she adds. \u201cDoctors know this and may be relieved when someone says no.\u201d <\/p>\n

She offers some ways into this talk: <\/p>\n

What is the usual course for people with my disease?<\/p>\n

Is it likely I’m going to get better?<\/p>\n

Since the illness is worsening, what will happen next?<\/p>\n

Am I approaching the end of my life?<\/p>\n

Would you be surprised if I died in a year?<\/p>\n

It\u2019s rare that medical decisions in advanced care need to be made instantly, Butler noted. \u201cTake a couple of days to think, to talk to family, to discuss the pros and cons thoroughly or get a second opinion.\u201d <\/p>\n

At the heart of what should drive the medical decisions you and your designated decision makers make, say these experts, are big, personal questions, with answers as individual as we are: What does a good day look like for me, and is there a good way for medical care to maximize those good moments? What are the trade-offs for extra days or weeks (such as more or less pain, more or less physical functioning, more or fewer side effects)? Is there a way for medicine to give me more of what makes life have meaning for me? <\/p>\n

The answers may lie in curative care, palliative (comfort) care or hospice care, often a mix of these over time. <\/p>\n<\/div>\n

Valerie\u2019s Difficult Choice<\/strong><\/p>\n

The experience changed Valerie profoundly. She made sure to ask many questions when she faced her own health crisis at age 82. <\/p>\n

Her cardiologist had told her that open-heart surgery to repair two stiff, leaking heart valves might allow her to live to 90. Without surgery, her odds of dying within two years were 50-50. She probed about the risks of stroke and dementia. She weighed losing what gave her life meaning and joy, like gardening, against a shot at extra time.<\/p>\n

Then Valerie declined the surgery.<\/p>\n

Doctors often say, \u2018We have a lot of arrows in the quiver\u2019\u2014it\u2019s like a code for \u2018We will try treatment after treatment\u2019
\n–Katy Butler<\/p><\/blockquote>\n

Instead, she spent the next five months with her grown children. She planned what should happen to her prized Swiss sewing machine. She updated her will. Her cardiologist continued to press for stents and bypass surgery, and she continued to resist. Palliative care and then hospice care managed her pain. And she slept in her own bed until the night before she died, lucid and conscious to the end.<\/p>\n

\u201cMy mother saw my father suffer too long and unnecessarily because of medical treatments that were focused on extending life, not maximizing quality of life and happiness,\u201d says Jeffrey and Valerie\u2019s daughter, Katy Butler, who contrasted their stories in her bestseller Knocking on Heaven\u2019s Door: The Path to a Better Way of Death <\/em>(Scribner, 2013).<\/p>\n

\u201cShe died the death she chose, not the death anyone else had in mind,\u201d Butler says.<\/p>\n

More Time? Better Time?<\/strong><\/p>\n

Studies show that most people prefer Valerie Butler\u2019s path at the end of life. They want to be in control, free of pain, retain their dignity and achieve closure while surrounded by family rather than machines. They prize well-being over simply being. Surveys of doctors<\/a> show that they too would rather die at home than the way most of their patients do\u2014receiving aggressive treatment to the end.<\/p>\n

In a study published in the Canadian Medical Association Journal<\/em> (November 2014), seriously ill, hospitalized patients and their families identified the most important topics they wished to discuss with doctors. Topping the list: patient values, prognosis and fears or concerns. Yet most reported that such dialogues never happened.<\/p>\n

\u201cDoctors often say, \u2018We have a lot of arrows in the quiver\u2019\u2014it\u2019s like a code for \u2018We will try treatment after treatment,\u2019\u201d Butler says. \u201cWhat patients want to hear is, \u2018We will take care of you until the end of your life. We want to discuss how you want to maximize your time at home, keep you comfortable and address your fears.\u2019\u201d<\/p>\n

But here\u2019s the problem: neither side brings it up.<\/p>\n

When well-informed, patients with advanced illnesses and their families tend to choose less care, in less institutional settings; they often have improved quality of life. In-depth discussions can also lead to more use of beneficial palliative and hospice care.<\/p>\n

A 2014 Institute of Medicine report urged Medicare reimbursement to health care providers for conversations about advance care planning<\/a>, which some insurers already do. Such talks aren\u2019t the same as the also-important arrangement of advance directives, such as living wills (which Jeffrey and Valerie Butler had). <\/p>\n

Vital Conversations<\/strong><\/p>\n

\u201cPaper directives are often only as useful as the conversations around them,\u201d says Mickey McIntyre, chief program officer of Compassion & Choices<\/a>, an advocacy group that helps families manage end-of-life preferences. \u201cWhat makes them good is how prepared people are to talk to providers in a way they can hear to get the quality of life they want.\u201d<\/p>\n

Compassion & Choices is one of several groups designing ways to help people frame these conversations. A new, interactive English- and Spanish-language website, PrepareForYourCare.org<\/a>, for example, uses geriatrician-created videos to help users decide what matters in life, tell others, and ask doctors effective questions. More than 20 diverse aging and caregiving groups have formed the Campaign to End Unwanted Medical Treatment.<\/p>\n

\u201cA lot of people go into health care settings not thinking logically because it\u2019s an emotional time. Providers are trained to be logical,\u201d says McIntyre. These approaches collide when the provider\u2014due to training and the medical system itself\u2014is focused on curing and extending life at all costs, but the patient lacks the full context, including risks, side effects, life impact and prognosis.<\/p>\n

\u201cResearch shows that patients tend to be more likely than their doctors to reject aggressive treatments, once they\u2019ve been informed of the pros, cons and alternatives,\u201d says author Katy Butler. Doctors, meanwhile, tend to widely overestimate survival and future quality of life, research by Harvard\u2019s Nicholas Christakis and others shows.<\/p>\n

Looking back, Katy Butler wishes she and her family had realized that when her father had his stroke, they\u2019d entered \u201ca gray zone, where the emphasis shifted from curing to caring, where all the questions that needed to be asked of medical care had shifted.\u201d<\/p>\n

Her mother, in contrast, acknowledged and even embraced the gray. \u201cI learned there\u2019s a great opportunity in knowing your days are numbered,\u201d Butler says. \u201cShe was able to settle her emotional and practical affairs in a way that was meaningful for her. She was able to give us that gift.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

When retired professor Jeffrey Butler suffered a stroke at age 79, the prevailing concept of \u201cthe best medicine\u201d kicked in to save him. He survived, though unable to complete full sentences. During stroke rehab, he developed a painful intestinal hernia. To qualify for the surgery recommended to repair it, a cardiac exam was ordered. When it showed a slow heartbeat, a pacemaker was urged.<\/p>\n

Read more The Struggle over Medical Decisions at the End of Life<\/span> ›<\/span><\/a><\/div>\n

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