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Have the Talk

Why a New Year's resolution for end of life plans is critical

“Whether you have an aging parent, are the aging parent, are facing a potentially life-threatening illness or have strong feelings about how you want your final days to be spent, it is essential to have the conversation with family.” – Amy Kontrick, assistant professor at Feinberg

This article originally appeared in the Huffington Post on January 19, 2016.

By Amy Kontrick

Two days before his death last week, rock star legend and artist David Bowie released a new album, Blackstar, his 25th. The 69-year-old died after an 18-month private struggle with cancer, and according to published reports, he died at home, peacefully, surrounded by family.

Bowie's son, Duncan Jones, later released a letter written to him by his father's palliative care physician. In the letter he recognized him for the choice, planning and effort that went into dying at home.

Not everyone has this experience, as Dr. Mark Traubert's letter details. Although most Americans report wanting to die at home, according to published reports only about a quarter do.

With the start of 2016, millions resolve to make their lives better in some way and health resolutions are popular. Yet, advance care decisions and discussions about end of life plans do not make the top 10 list. The new reimbursement codes that began Jan. 1 for Medicare to cover such planning sessions may help.

As an emergency physician, I wish all the families I had encountered with a loved one facing a life-threatening diagnosis had been prepared with the knowledge provided by open discussion. Occasionally I encounter the family or patient who know exactly what needs to be done and are at peace with their decisions. Although sadness and loss are still pervasive in these situations, there is comfort.

Unfortunately, more often, my question about goals of care is met with shock, horror and -- at times -- anger. The fear and hysteria around the "death panels" continues for some people. But respecting the wishes of those faced with death is not the same as deciding who dies and when.

So many abdicate control over how to die to their loved ones -- or worse -- to doctors who do not know them. Despite many expressing a wish to die at home, only 22 percent of people do. More than half, 58 percent, will die in a hospital.

Whether you have an aging parent, are the aging parent, are facing a potentially life-threatening illness or have strong feelings about how you want your final days to be spent, it is essential to have the conversation with family. You can decide who will be the surrogate to make decisions in the event you no longer can.

In a classic study of Emergency Department patients, 77 percent said they did not have advance directives -- defined as a do not resuscitate order, signed healthcare power of attorney or living will. When asked why, 40 percent said they had never thought about it. Nearly a quarter preferred to leave the decision to a family member.

For those who have advance directives, a 2015 study shows they were made available to the provider less than 44 percent of the time.

Patients have told me they spoke with their doctors but not their family members about their wishes. These wishes can involve how long to provide extraordinary measures, use of medications, and also organ donation or even burial arrangements.

Often people have this information securely stored in their attorney's office never to be known by those who need it most -- their loved ones and care providers. Frequently people say they are afraid of discussing this topic for fear of upsetting their loved one. Studies don't bear this out.

An analysis of more than 40 studies reveals that surrogates can suffer guilt and other negative emotions about their decision long after their loved one has passed. Those making decisions when the wishes of their loved ones were known, often suffered much less emotionally and even reported positive emotions; they felt empowered to act for their loved one who could no longer act on his or her own.

A recent study of adults in Britain highlights all the reasons we should talk openly about our wishes. More than 50 percent of those surveyed reported they were scared or very scared of dying in pain. Yet studies show that those who have had end of life discussions enjoy a better quality of life and earlier interventions to control and manage pain.

majority, or 71 percent, agree that quality of life was more important than length of life. More than half, or 51 percent, said they did not know the wishes of their partner, yet 80 percent said they were concerned about the grief their loved ones would experience. Three-quarters, or 75 percent said they were concerned about not being there to help their loved ones after death.

All of these issues can be addressed in advance of a medical event in discussion with loved ones.

Yet I meet daily with well-meaning families who have less knowledge of their loved ones' wishes and are less secure in their decision-making.

Expressing your wishes ahead of time gives loved ones the greatest gift in your absence--the peace knowing they helped you, as you would have wanted, when you could no longer help yourself.

- Amy Kontrick, MD is an assistant professor of Emergency Medicine at Northwestern University's Feinberg School of Medicine and a fellow in NU's Public Voices Fellowship with The OpEd Project.

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