Blog Post: Opening Conversations About End-of-life Care by Carolyn Pare

Who knew La Crosse, WI, is considered to be the “Best Place to Die in America,” where 96 percent of adults have health care directives in place? Or that 63 percent of Americans die in hospitals and another 17 percent die in institutions such as long-term care facilities, when nearly two-thirds say they would prefer to die at home? Or that fewer than 30 percent of Americans have an advance directive such as a living will?

These and many other surprising facts came to light during our latest Action Group member meeting, featuring presentations from Steve Calvin, M.D., Jennifer Lundblad, and Karen Peterson (see below).

The primary goal of the meeting was to increase awareness and understanding among employers about advance care planning and end-of-life care to enable them to support employees in dealing with these issues. We also explored the limitations of health care delivery and what really matters in end-of-life care.

Perhaps the most important message was that talking about end-of-life care needn’t be difficult, especially when conversations are started when all is well. In this recent article, “End-of-life: The Real Health Care Crisis,” the author calls for Americans to come to grips with “rampant and seemingly uncontrollable costs of sustaining life in a system which lacks any semblance of common sense.”

The Action Group has developed a simple communications toolkit for employer members, which is available on our website. Here are some highlights from the member meeting:

Jennifer Lundblad, President and CEO, Stratis Health

• The short definition for palliative care is “interdisciplinary care for patients and their families that improves the quality of life during a serious and/or life-limiting illness.” It is wrapped around total care and provided in places like hospitals, clinics, homes, nursing homes, assisted living centers, or care settings.
• The pillars of palliative care include:
  • Pain and symptom management
  • Psychosocial and spiritual support
  • Information and support to make decisions that reflect goals and values
  • Continuity of care
• Hospice care is for people who are in the last six months or so of life. Palliative care is not the same as hospice care because it focuses on people with a six-month life expectancy (or less) who are no longer receiving curative treatment. Hospice care is often delivered at home, but it can also be provided in facilities.
• The hospice philosophy embraces six significant concepts:
  • Death is a natural part of life. When death is inevitable, hospice will neither seek to hasten or postpone it.
  • Hospice care establishes pain and symptom control as an appropriate clinical goal.
  • Hospice recognizes death as a spiritual and emotional, as well as a physical, experience.
  • Patients and their families are a unit of care.
  • Bereavement care is critical to supporting family members and friends.
  • Hospice care is normally available, regardless of the ability to pay.
• Doctors and patients both think that having “The Talk” about end-of-life care is important, but there is a huge gap. Patients and their families think that if they have a serious illness, their doctor will start the talk, while doctors say they believe patients should be the first to bring up the topic. Consequently, these talks may not take place at all, or they occur during a health crisis when it’s very stressful for all.

Karen Peterson, Director of Program Operations, Honoring Choices Minnesota

• Honoring Choices began because we knew we could do a much better job with advance care planning:
  • 90% of people say talking with their loved ones about end-of-life care is important, but only 27% have done so.
  • 82% of people say it’s important to put their wishes about end-of-life care in writing, but in Minnesota, only 35% have done so.
  • 80% of people say that if they were seriously ill, they would want to talk with their doctors about end-of-life care, but only 7% have had that conversation.
• Doctors aren’t trained to have advance care planning discussions with patients; they are trained to think of death as failure.
• Advance care planning:
  • What it is: A process focusing around conversations about health care choices for the future.
  • Why it matters: Any one of us could be in a situation where we are unable to speak for ourselves or make health care choices. Your doctors and loved ones can’t follow your wishes if they don’t know what they are.
  • How to begin: Resources are available online, through many health care providers, and on the website Honoring Choices Minnesota.
• A Health care directive is a written document everyone should complete after contemplation and discussion.
• Physician Orders for Non-sustaining Treatment or POLST is an approach to end-of-life planning based on conversations between patients, loved ones, and health care professionals designed to ensure that seriously ill or frail patients can choose the treatments they want or do not want and that their wishes are documented and honored.
• Advance care planning is a huge gift for families. Otherwise, loved ones already crushed by a sudden crisis may find added to their shoulders the agony of a fateful guess.
• There are three primary questions to ask during advance care planning:
  • Who would you want to make decisions for you if you couldn’t make them yourself?
  • What would your goals of treatment be if you permanently lost the ability to meaningfully know who you were, who you were with, or where you are?
  • Do you have any spiritual, personal or cultural views that would affect treatment choices.
• Five things to consider when choosing an agent:
  • Do you trust this person to be able to make tough decisions?
  • Will this person honor your wishes even I they don’t personally agree with them?
  • Is this person emotionally strong enough to make choices at a difficult time?
  • Can this person stand up for you if family members disagree?
  • Is this person likely to be nearby and available in case of emergency?
• Living well questions:
  • What gives meaning or brings quality to your life right now?
  • What fears or worries do you have about aging or about your health?
  • What helps you get through tough times or stressful situations?
• It’s important to explore your feelings and preferences, to talk with your loved ones, to write or revisit your healthcare directive, to bring your directive to your health care provider, and to revisit your directive regularly.
• The “5Ds” of reviewing your directive:
  • You start a new decade
  • There is death that affects you
  • You experience divorce or other change in relationship status
  • You receive a diagnosis
  • Your is a decline in your health status
• Honoring Choices Minnesota offers templates of healthcare directives in multiple languages, a number of videos, a robust website, and free speakers for employer lunch and learn meetings.
• People are reluctant to start the conversation, but once they start it is a relief. Identifying issues and questions to work through aid decision-making long before it is needed.

Steve Calvin, M.D., co-chair of the Program in Human Rights and Health, University of Minnesota School of Public Health

• Six years after legislation to encourage end-of-life planning touched off a furor over “death panels,” the Obama administration issued a final rule authorizing Medicare to pay doctors for consultations with patients on how they would like to be cared for as they are dying. (Read more here.)
• There has been considerable societal “freaking out” about end-of-life care, because some people have preyed on fears about death panels.
• There is huge tension among employers about what to do and how to approach the topic with employees.
• It’s important to understand and communicate that the motivation isn’t around reducing costs; it’s around allowing people to have their choices honored. We need better mechanisms to facilitate discussions.
• Atual Gawande talks about barriers physicians experience in bringing up the topic, not the least of which is that doctors have a sense that death is a failure. Some physicians simply can’t enable end-of-life conversations because they can’t admit things are not going to get better.