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How Patients, Families and Clinicians are Changing End-of-Life Conversations

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How Patients, Families and Clinicians are Changing End-of-Life Conversations

Imran Cronk

Updated: March 14, 2019    Published: August 16, 2015

Imagine this scenario: an elderly woman, Mrs. Jones, is rushed from the nursing home to the hospital one evening. Although she has been in and out of the hospital four times in the past year, this situation is more serious. She has chronic congestive heart failure and the physician believes that she will not survive long without a heroic intervention. If the procedure fails, though, Mrs. Jones could end up needing permanent life support in order to stay alive.

Her children are called in from across the region and are gathered at the hospital within two hours. The decision needs to be made quickly, but none of the children in the room – some of whom have not seen each other on a regular basis in 10 years – are quite sure of what their mother would want if she were conscious and not under a medical coma. Some advocate for doing whatever is necessary to extend her life, while others think she would want to “go with dignity” and receive hospice care in her final hours.

These conversations are happening in emergency rooms across the nation. Many times, families will go through this experience several times with an aging loved one. Decisions around care at the end of life have never been simple, but in recent decades they have taken on new importance as we have devised new methods to prolong life. These methods bring high cost and sometimes diminish quality of life in return.

Consider this stunning fact: one in three Americans has been forced to make a decision about whether to keep a loved one alive using extraordinary means. These measures are seldom in accordance with patient values or preferences – most patients want to die in their homes, but most end up dying in the hospital – and the medical world is asking itself tough questions: who decides what happens in these life-and-death matters, and how should the complicated web of decisions be navigated?

Even more important, though, is to have conversations with family members and doctors to get on the same page before a crisis emerges. According to the Conversation Project, a non-profit wants to encourage and facilitate end-of-life dialogue, 90 percent of people acknowledge the importance of having end-of-life conversations but only 27 percent do so.

I spoke with Ellen Goodman, who is the co-founder of the Conversation Project and a former Pulitzer Prize-winning, nationally-syndicated columnist for the Boston Globe.

“Death no longer comes in a way we used to think of as natural,” she says. “Instead, it comes with a cascading number of choices and decisions. We believe that the first step is to have these conversations with the people you love at the kitchen table.”

Goodman and her team put together a “Conversation Starter Kit” that guides patients and their families through these difficult discussions. The guide asks general questions – “What matters to me at the end of life is…” – and becomes more specific about the patient’s preferred place of care (hospital or home), desired length of life-sustaining care, and more. Over 200,000 people across all 50 states and in 176 countries have downloaded the starter kit.

While these conversations are vital to have with loved ones, Goodman sees a disconnect between patients’ convictions and the healthcare delivery system. She hopes that the starter kit could be used during wellness visits. “Doctors, at this point, have no training in these conversations and are universally uncomfortable with them. It’s important that doctors get paid for talking and not just for procedures. If you’re paying doctors to do these 900 different things, procedure after procedure, who talks about when enough is enough? It’s only right to encourage doctors to know how their patients feel: when they want extreme measures and when they want to limit them.”

There are options for families who want to have these proactive discussions and help elderly family members receive care that is consistent with their values. The most common method is through an advance directive, also known as a living will.

The living will is a legal document that spells out how a person wants to be treated if he or she is unable to make decisions for him or herself – for example, while in a coma, on life support, or with brain damage. However, family members and caregivers might make decisions in the hospital without adhering to a living will, if one even exists, due to miscommunication or because the patient’s wishes for the situation at hand were not detailed in the living will.

Ellen Goodman emphasizes the importance of a “health care proxy”, which is someone who is empowered to make appropriate decisions on behalf of a relative or close friend. “There’s no checklist on Earth that can cover every medical possibility for someone who is facing serious illness. There just isn’t. So we have to find somebody who understands what matters to us and understands our values, and the conditions under which we want extreme measures and the conditions under which we don’t,” says Goodman.

Surveys indicate that many people, especially those who are not yet old, have not created living wills. In 2014, a representative survey with nearly 8,000 respondents indicated that just over a quarter (26.3 percent) of Americans have prepared such documents. Despite these low levels of planning among young people, three quarters of older Americans have made advance directives. The number has grown considerably since 2000, when less than half had done so. However, that still leaves a significant minority who have not formally expressed their wishes.

The movement to make these conversations more normalized and accessible for patients was hampered in 2009 by the “death panels” label that was applied to a proposal to fund end-of-life conversations between Medicare patients and their physicians. However, some new efforts are emerging: the Centers for Medicare and Medicaid Services (CMS) has proposed a plan to fund unlimited end-of-life care conversations for patients and their caregivers – not just physicians, but nurse practitioners and assistants as well. The agency expects to release final rules for the benefit in November.

CMS’ chief medical officer, Dr. Patrick Conway, said that end-of-life conversations are “an important part of patient- and family-centered care” and said that the program would not just fund one conversation, but as many as necessary to help patients and their providers work through such a sensitive topic of discussion.

The emphasis on improving the process to be more patient-friendly, provider-friendly and useful is important. Living wills have been around for almost 50 years, but the format and purpose of these documents has evolved as the general public and the healthcare industry become more familiar with them. Recent efforts have sought to help living wills wield more influence over actual care provided in the final stretches of life.

The answer, some say, has arrived in a form called POLST, which stands for Physician Orders for Life-Sustaining Treatment. The form covers the patient’s values, beliefs and care goals along with the physician’s diagnosis, prognosis and treatment options. Filling out the POLST form, which is a collaborative effort between a patient and physician, creates a medical order that becomes part of the patient’s personal health record.

The form is simple to understand and fill out (see California’s POLST form here), but it goes into enough detail to provide an authoritative guide for future care decisions. And critically, the form captures cultural and religious beliefs that are central to the way in which patients make decisions about life-and-death matters. However, POLST has a limitation: it is only for people who have already been diagnosed with a serious condition.

Even with all these new programs and approaches, there are some coordination gaps to resolve. “If you have an advance directive in one state and you get sick in another state, it may not be shared and known,” Ellen Goodman points out. “In fact, if you have an advance directive in one healthcare system and you get sick in another healthcare system, it may not be known. There have to be ways of having those directives available when the time comes.”

We must do more to align patients’ values and wishes with the treatment they end up receiving. That means making it easier for patients and their families have end-of-life conversations and to document the wishes in a medically useful format that follows the patient across care settings – and across time, as patients’ values can change as the end of life approaches. Anything short of that future state will add to the level of physical pain and emotional stress endured by patients and their families during the most vulnerable and sensitive moments of their lives.

“We need to realize that Americans face the healthcare system with two conflicting fears: one is that they won’t get the care they need and the other is that they’ll get care they don’t want,” says Goodman. “Let’s put the patient at the center of this conversation. By listening to that person, we will be able to have their wishes expressed and respected.”

Goodman is right. Through listening, understanding and encouragement, we can make the end-of-life care system work for everyone – patients, families and clinicians.

NOTE: The views expressed here are those of the authors and do not necessarily represent or reflect the views of Healthcare, Inc. and

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