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

General News

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.


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.   

CMS Allows Reimbursement for Advance Planning

Compassion & Choices received some very encouraging news on the heels of our federal policy briefing- one of our policy agenda items has already been implemented. The Centers for Medicare & Medicaid Services (CMS) released a rule that allows the agency to reimburse doctors starting Jan. 1, 2016, for communicating with patients about whether and how they would want to be kept alive if they become too sick to speak for themselves.

“This new rule removes a barrier for doctors to initiate and engage in conversations, a key step to ensure healthcare providers honor patients’ treatment goals, preferences and values,” said Kim Callinan, Chief Program Officer for Compassion & Choices, which advocated for this proposal as a provision in the Affordable Care Act. “The complimentary step to achieve this goal is for CMS to formulate a proposal to ensure that healthcare providers are not reimbursed for unwanted medical treatment, which polling data suggests about 25 million American have experienced.” CMS has also added Advanced Care Planning as an optional element (at the beneficiary’s discretion) to the Annual Wellness Visits.

Click here to download and read our federal policy agenda, and click here to learn more about our Capitol Hill briefing.

Compassion & Choices Capitol Hill Briefing

By Khalid Pagan

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.

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.

Strengthen Medicare Plan to Pay Docs for End-of-Life Care Conversations

By David R. Grube, MD

David Grube-blog artMy mom paid a painful price for not completing an advanced directive about her preferences for end-of-life medical care. She was an intelligent and organized woman who had everything in her and my dad’s life planned out and written down. She even drafted her own obituary. Ironically, she never discussed her end-of-life care preferences with my father or her physician son (me), preferring to talk about “more pleasant subjects.”

As a result, after she developed colon cancer at age 86, my dad and I had to figure out how to treat her post-surgical medical complications of heart and renal failure. She died in hospice care after prolonged, unbearable, and unnecessary suffering. It broke both my dad’s heart and mine.

Unfortunately, my mother’s story is all too common. Nearly one out of four older Americans (24 percent) say that either they or a family member have experienced excessive or unwanted medical treatment, the equivalent of about 25 million people, according to a poll conducted last year by Purple Strategies.   More

Calif. Gov.’s Signing of Aid-in-Dying Bill Should Spur Action in Other States

Brittany Maynard’s Story, Victory in Nation’s Most Populous State Will Have Ripple Effect for Death-With-Dignity Movement

(Sacramento, Calif. – Oct. 5, 2015) Gov. Jerry Brown’s signing of California’s End of Life Option Act today should spur legislators in other states to advance bills to allow terminally ill adults the option of medical aid in dying to end unbearable suffering, advocates say.

The bill’s signing into law comes one year after Brittany Maynard and her family launched a partnership with Compassion & Choices on Oct. 6, 2014, to authorize this end-of-life option in California and other states nationwide. Maynard was a 29-year-old Californian who brought international attention to the issue when she had to move to Oregon to utilize its death-with-dignity law, which she utilized to end her suffering from terminal brain cancer on Nov. 1, 2014.

“This is the biggest victory for the death-with-dignity movement since Oregon passed the nation’s first law two decades ago,” said Compassion & Choices President Barbara Coombs Lee, a lawyer, former ER and ICU nurse and physician assistant, who coauthored the Oregon Death with Dignity Act.

“This victory is hugely significant in both substance and scope,” Coombs Lee observed. “Enactment of this law in California means we are providing this option to more than 1 in 10 Americans.” More