End-of-Life Choice, Death with Dignity, Palliative Care and Counseling

Death with Dignity

Durable Power of Attorney for Healthcare – How to Make the Selection

By Sid Adelman

The closest most of us will come to experience torture will be at the end of our lives in we end up in the intensive care unit (ICU), a skilled nursing facility or in a dementia ward. The Institute of Medicine’s Key Findings and Recommendations in its Dying in America report suggests one way to avoid this nightmare scenario is to  designate “a surrogate/decision maker.” This step is important because this surrogate may be your only hope if you are unable to speak for yourself for avoiding the suffering and torture associated with unwanted and unnecessary medical procedures, tests and treatments that may be invasive, painful, or fraught with complications.

What is a Durable Power of Attorney (DPOA) for Healthcare

Your designated person or persons who will speak for you, but only if you are unable to speak for yourself or make medical decisions for yourself.  You might be in a coma, you might be sedated or you might be so confused that you are unable to make a rational decision. This designated person or persons will make sure your wishes are honored.

Isn’t my advance directive for healthcare enough?

Even though your doctor and the hospital have your advance directive on file, it might be overlooked, it might be inaccessible, it might not be apparent or it might be purposely ignored and that’s why you need your DPOA to be available, giving him/her the power to make decisions – with the understanding of what you want. 

How to select the DPOA

The optimal choice would be:

  1. A person who will do whatever is necessary to honor your wishes. A person with a backbone, willing to stand up to the medical establishment, to family and friends who “know better what you (or God) would want.”
  2. A person who is mentally competent, healthy, perhaps younger, forceful even as they age and be geographically accessible.
  3. It does not have to be a spouse or family member. Sometimes a dispassionate and unemotional friend would be a better choice.

You will want a second and maybe a third person as a backup in case the first DPOA is unavailable.

Communicating with your DPOA

If your intended DPOA accepts the role, you should provide them with a copy of your Advance Directive for Healthcare in which you have designated them as DPOA and made clear what you want done medically if you are unable to make decisions for yourself. The conversation should go beyond just the specifics of a ventilator, CPR, or a feeding tube, but should include the values and priorities that are important to you. They would include desire for control, level of pain you are willing to accept and much more. See the Compassion & Choices addenda – Values Worksheet and My Particular Wishes for a more complete list.

Doctors Weigh in on the End-of-Life Conversation


featured_health-careBy Katie Wingo

The end-of-life conversation is rooted in empowerment through education, and doctors play a key role in C&C’s mission to help Americans get the care they want. We are gratified to see a trend in today’s news: doctors, more and more, are contributing to the end-of-life care and planning conversation in a big way through opinion pieces and interviews with major outlets beyond the medical beat.

From criticism of the healthcare system to introspective pieces on practice, end-of-life issues are increasingly front and center of health and wellness sections in publications like The New York Times and the Washington Post.

Oncologist Ezekiel J. Emanuel contributes to the New York Times’ Sunday Review with his essay about seniority in hospitals and the rise of compassionate care training in a younger crop of surgeons. He makes the case that those younger surgeons may provide better care than their senior counterparts who come from the school of aggressive treatment. He cites a study that found there are higher mortality rates in patients with life threatening heart problems when senior cardiologists treat them. One possible explanation for this counterintuitive finding is that seasoned physicians may treat patients too aggressively.

Doctors are weighing in on the Centers for Medicare and Medicaid’s (CMS) decision to cover advanced care planning by reimbursing doctors for discussing it with their patients. Jennifer Brokaw, founder of the medical advocacy group Good Medicine and former emergency physician, writes a piece featured on TIME.com about how the CMS plan is a good step, but falls short. She argues that the plan addresses incentive (paying doctors), but the amount isn’t enough to cover the meaningful and in-depth conversations needed to adequately address the complex task of end-of-life planning. She also worries that doctors are not adequately trained to provide this very important service to their aging patients.

Emergency room doctor Zaid Obermeyer is interviewed for a piece in the online magazine STAT and expresses his concern for the lack of realism and candor in caring for patients. Doctors, taught to practice through optimism and aggressive treatment, aren’t being forthright about the gravity of their patients’ illnesses. The consequence is a lack of planning on the part of patients and families, which can result in crazed end-of-life planning in the emergency room when emotions are high. Dr. Obermeyer is working to develop a new method to help physicians calculate their patient’s rate of decline to encourage planning – before they reach the emergency room.

Massachusetts Debates Medical Aid in Dying

KulbakoLR-7021“Each of us should have the option of deciding how our final days will be.”- Dan Diaz

Just a few weeks after the anniversary of Brittany Maynard’s first video, Dan Diaz testified at a public hearing  before the Joint Public Health Committee in Massachusetts in support of a death-with-dignity law. Dan drew on the difficulties he and Brittany faced after her terminal diagnosis to make a powerful, compelling argument in favor of expanding end-of-life choices. As medical aid-in-dying laws move forward in more than 26 states.  Compassion & Choices sees Massachusetts as one of our best chances to pass a death-with-dignity law in 2016.

H1991 ‘An Act affirming a terminally ill patient’s right to compassionate aid in dying’  would allow mentally competent terminally ill adults diagnosed with six months or less to live to end their lives peacefully, surrounded by their loved-ones. Death-with-dignity supporters from across the state, and across the country, showed up to support the bill.

H1991 was introduced again this year by State Rep. Louis Kafka, who became a champion of the legislation after being inspired by a terminally-ill constituent named Al Lipkin. Rep. Kafka and three of the bill co-sponsors; Reps. Lori Ehrlich, Timothy Madden and Cory Atkins  testified in favor of the bill at the hearing.

KulbakoLR-5087

The two State House hearing rooms were packed to the brim for this important hearing. We had an impressive turnout, about 200 supporters with a 75-25 ratio of DWD supporters to opponents. The recent victory in California seemed to bring the opposition out in larger numbers, which we expected. We heard supportive testimony from legislators, medical doctors, nurses, social workers, hospice workers, faith leaders, supporters with personal stories and those who have seen their loved ones die painful deaths. Compassion & Choices came to the hearing prepared with a strong network of grassroots supporters, volunteers, and facts.

Opponents came armed with misleading talking points; one opponent’s testimony even cited the movie The Martian in order to make an argument against death with dignity. We’re confident that these scare tactics won’t work in the end, and we need to continue truth-telling so legislators understand that death with dignity is about providing a widely recognized option to terminally ill, mentally competent adults, and not anything else.   

Compassion & Choices Capitol Hill Briefing

By Khalid Pagan

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C&C’s Chief Program Officer Kim Callinan

At our federal briefing last week, Compassion & Choices staff presented our federal policy agenda and our work on the state level to Congressional staff, Beltway thought-leaders and Washington-area supporters. The briefing was a huge success! If you couldn’t make it, click here to watch the full video of the briefing.

Kim Callinan, our Chief Program Officer, was the briefing moderator and she presented C&C’s federal policy agenda. Our speakers included Dan Diaz, Brittany Maynard’s husband, who has testified in favor of death-with-dignity laws in California, Washington D.C., and Massachusetts since Brittany passed last year. Charmaine Manansala, Compassion & Choices’ California Political Director, outlined the provisions in the California law, which was based on 17 years of success in Oregon. Dr. David Grube shared his experience as a family physician working in Oregon during the implementation of Oregon’s Death with Dignity Act, and C&C board member Rev. Dr. Ignacio Castuera shared his experience with outreach to the medical and faith communities.

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Dr. David Grube and Charmaine Manansala

Our Federal Policy Agenda

You already know about our advocacy for state aid-in-dying laws, and now you can take a look at our newly-updated federal policy agenda.

The federal policy agenda calls on policymakers to improve end-of-life care through actions in five major areas. When followed, our agenda lays out a roadmap for achieving patient-centered, family-oriented care that is responsive to personal choices.

Our federal priorities range from changing the ways that doctors interact with their patients to engaging the public and the medical community to amend best-practices and training programs. Some highlights of our policy agenda include:

  • Establishing payment for palliative care consultations and training so that we have a pool of providers with the experience necessary to ensure the patient’s values and choices are being met.
  • Encouraging Congress and/or CMS to end reimbursement for unwanted medical treatment. Studies indicate that more than 25 million Americans have received unwanted medical treatment.
  • Requiring electronic medical records to to include advance care planning information. Today, even if patients do have advanced directives, they are often undiscovered or even ignored by doctors.
  • Allowing patients admittance into hospice while continuing attempts to cure their illnesses. Patients shouldn’t have to choose between palliative care and a chance to live longer.

We received some very encouraging news on the heels of our briefing- one of our policy agenda items was implemented! The Centers for Medicare and Medicaid Services (CMS), the agency that regulates and coordinates Medicare and Medicaid payments, announced that it will allow reimbursement for doctors for advance end-of-life care planning conversation. CMS has also added Advanced Care Planning as an optional element (at the beneficiary’s discretion) to the Annual Wellness Visits. This new rule removes a barrier for doctors to initiate and engage in these conversations, a step in the right direction of normalizing end-of-life planning. But we still have a lot of work to do.

Dan Diaz and Dr. Ignacio Castuera
Dan Diaz and Dr. Ignacio Castuera

What You Can Do

Sens. Mark Warner (D-VA) and Johnny Isakson (R-GA) have introduced the Care Planning Act, legislation which is designed to give people with serious illness the freedom to make more informed choices about their care, and the power to have those choices honored. Their bipartisan legislation would further efforts to strengthen end-of-life care by developing quality measures, promoting public and provider education, addressing the decision-making for people with serious illness throughout the process, and including adherence and portability measures to ensure that patients’ choices are honored.

We need you to write your Senator and ask them to co-sponsor the Care Planning Act. In addition to Senators Warner and Isakson, the bill currently has 4 bipartisan cosponsors: Sens. Tammy Baldwin (D-WI), Susan Collins (R-ME), Amy Klobuchar (D-MN), and Shelley Moore Capito (R-WV).

Click here to write a letter to your senators and ask them to cosponsor The Care Planning Act of 2015. Make sure to include your personal story about your parents, grandparents, spouse, friend, or other loved one.

New Brittany Maynard Video Shows Impact of Death-With-Dignity Advocate’s Message

Compassion & Choices Video Released on Eve of Deadline for CA Gov. to Act on Bill Inspired by Maynard

(Washington, D.C. – Oct. 6, 2015) Compassion & Choices today released a new video featuring California death-with-dignity advocate Brittany Maynard to commemorate the first anniversary of the organization’s partnership with Maynard and her family.

The release of never-before-seen excerpts of Maynard’s original video, recorded in Aug. 2014, which launched this historic partnership one year ago today on Oct. 6, 2014, comes one day after California Gov. Jerry Brown signed a death-with-dignity bill inspired by her to become law.

“Brittany came on the scene and set in motion a chain of events leading to the passage of an aid-in-dying bill through the California legislature less than one year after her death. We had been trying to do that since 1991,” says Compassion & Choices President Barbara Coombs Lee, who coauthored the Oregon death-with-dignity law. “In 2014, there were aid-in-dying bills in four states. Immediately after Brittany’s emergence on the scene, lawmakers in 25 jurisdictions, plus the District of Columbia, introduced bills.”

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