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

General News

Supporters Celebrate Progress of Aid in Dying Legislation for Terminally Ill Coloradans

Following hearing, the House Judiciary Committees Advanced the Bill to the Full House

(Denver, Colorado – Feb 4, 2016) Despite the Colorado Senate’s inaction on the Colorado End of Life Options Act yesterday, advocates for the legislation are celebrating today as their bill moves to the House Floor.

“The campaign to give terminally ill Coloradans the option of medical aid in dying had a real victory today,” said Compassion & Choices Cultivation Manager Roland Halpern. “We applaud members of the House Judiciary Committee who listened to their constituents and agreed that people facing unbearable suffering at the end of life should have more options and more control over how they spend their final days and weeks. Where Senators tried to shut down debate yesterday, the House chose to trust Coloradans to have a serious conversation about the end of life.”

On Wednesday, SB16-025, the End of Life Options Act fell victim to partisan politics in the Colorado Senate Judiciary Committee; on Thursday, members of the House Judiciary committee voted six to five in favor of the bill, allowing the legislation to move to the House floor.

The Colorado End of Life Options Act is closely modeled after the Death With Dignity Act in Oregon, which has worked well for 17 years, without a single documented case of abuse or coercion. California recently became the 5th state to authorize the option of medical aid in dying and the 2nd state after Vermont in 2013 to do it via the legislature. The other three states that authorize this end-of-life option are Oregon (via referendum in 1994), Washington (via referendum in 2008) and Montana (via state Supreme Court decision in 2009). More than half the states have considered similar legislation in the past year.

Coloradans from across the state came to the Capitol on Thursday to testify in support of The Colorado End of Life Options Act, which would allow mentally capable, terminally ill adults the option to request a doctor’s prescription for medication that they could take, if their suffering becomes unbearable, to painlessly and peacefully die in their sleep.

Patti James, a 79 year-old nurse from Littleton who also has terminal cancer, testified at the House hearing and later expressed her gratitude: “I am a nurse who has seen too many difficult, painful deaths. I am also a woman with stage 3 lung cancer, which means a cruel and terrifying dying process is in my future. I want to thank the committee for truly hearing what we had to say and moving this legislation to the next step. I may not ultimately be able to access this compassionate option, but I hope other dying Coloradans can one day.”

Many Coloradans went to difficult lengths to get to the Capitol and have their voices heard. Joellyn Duesberry is a 71 year-old from Greenwood Village. She explained, “I have forfeited my privacy in order to be robustly vulnerable before all of you gathered here [because I] want my dying to be of some service to humanity.”

Dr. Lauri Costello, a family doctor from Durango, made it clear to members on the committee why she is confident supporting the Colorado End of Life Options Act: “The term ‘physician assisted suicide’ is, frankly, deeply offensive to me as a physician and to many of my physician colleagues.  This term does not refer to any legal medical procedure, and insinuates that physicians help their patients commit suicide.  Suicide and euthanasia are both illegal in all 50 States and will remain so.  Neither is remotely related to medical aid in dying, which this bill addresses.”

Dan Diaz, who was in Colorado last week, had his testimony read aloud to the House committee and provided video testimony given by his late wife, Brittany Maynard. Maynard had terminal brain cancer and moved from California to Oregon in 2014 to access that state’s Death with Dignity Act. Diaz testified, “As a Catholic, I believe it is not for me to judge someone else’s decision regarding their own end of life.  I respect those who might make a different decision if they were in Brittany’s shoes, so I don’t understand why they do not extend the same respect to those of us, and the 68% of Coloradans, that agree with Brittany and support End-of-Life Options for terminally ill individuals.”

Presidential Campaign Forum Raises End-of-Life Options Issue

End-of-Life Options Organization to Host Teleconference Before Nevada Primary

(Portland, OR – Feb. 4, 2016) In response to a unique question about end-of-life care options raised during a CNN presidential town hall last night by terminally ill supporter Jim Kinhan, Compassion & Choices announced today it will host a teleconference on the issue before the Nevada primary. The teleconference will take place on Feb. 16 at 8 p.m. EST/5pm PST, at a location still to be determined.

Below is a partial transcript of the presidential town hall exchange between Hillary Clinton and Jim Kinhan, an 81-year-old supporter of Compassion & Choices dying from colon cancer, who wrote an op-ed about it published in the Concord Monitor.

KINHAN: “… I wonder what leadership you could offer within an executive role that might help advance the respectful conversation that is needed around this personal choice that people may make, as we age and deal with health issues or be the caregivers of those people, to help enhance their end of life with dignity.”

HILLARY CLINTON: “… this is the first time I’ve been asked that question … And I thank you for it, because we need to have a conversation in our country … So it is a crucial issue that people deserve to understand from their own ethical, religious, faith-based perspective … I want, as president, to try to catalyze that debate because I believe you’re right, this is going to become an issue more and more.”

“Options for end-of-life care are a big deal for millions of older Americans like Jim Kinhan and their baby boomer caregivers,” said Compassion & Choices Action Network President Barbara Coombs Lee, who was an ER and ICU nurse and physician assistant for 25 years. “Virtually every national and state poll shows voters from all political persuasions and demographic groups want autonomy to choose from the full range of end-of-life care options, including hospice, palliative care and medical aid in dying.”

“Most people want to die at home and avoid futile, painful, unwanted medical treatments that only extend their dying process and destroy their quality of life,” added Coombs Lee. “We are hosting this teleconference so journalists, politicians and voters unfamiliar with end-of-life care options can learn about and discuss this issue.”

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.

Inside Scoop: Let the Candidates Know Where you Stand

By Mark DannSD_logo-lg

Hillary? Ted? Bernie? Or the Donald?

As we all know, the 2016 race for the White House is underway. And we have a perfect opportunity to talk with to the presidential campaigns about what is important to you.

As a member of the Leadership Council of Aging Organizations (LCAO) – a 72-member coalition of the nation’s leading non-profit organizations that serve older Americans – Compassion & Choices will sponsor Seniors Decide 2016, the nation’s only forum where all of the presidential candidates are invited to address issues that are important to America’s older adults.

We want you to participate. Head to the Seniors Decide website to ask the candidates about their view on end of life issues. Before we head into the voting booth, the candidates need to tell us how they plan on increasing care and choice at the end of life, whether they support hospice care for people who are still trying to cure their ailments, and what they’ll do to stop unwanted medical treatment. 

The event will be held on Friday, February 17 at 1 pm ET in Washington DC, and will be live-streamed nationwide.

The forum will take place right before Super Tuesday, when 12 states will hold their presidential primaries or caucuses.Let the candidates know that you’ll be watching by sending them a question at SeniorsDecide.org.

Seniors Decide will post a list of questions to show the candidates what Americans nationwide are concerned about. Let’s make sure end-of-life care is represented.

This is going to be an exciting election year and we need to hear your voice!

End-of-Life Care: Are We Ready for Real Reform

By Kim Callinan, Chief Program Officer

Kim-CallinanOver the past several decades, our unprecedented medical advances have outpaced our progress in ensuring that people with advanced illnesses have the comfort and quality of life they deserve as they near the end of their lives. Most people who indicate their end-of-life care preferences choose to focus on alleviating pain and suffering, but the default mode of hospital treatment is acute care, concludes a September 2014 Institute of Medicine (IOM) report entitled Dying in America. Why has this unacceptable situation happened?

As a society, we have always shied away from talking about death — despite the fact that it is an eventual outcome for all of us. Only one of every six adults (17%) actually have talked with their doctor or healthcare provider about their end-of-life priorities and values, according to a September 2015 Kaiser Family Foundation Survey.

Unfortunately, most doctors aren’t any more prepared to have these conversations than are their patients. Most physicians don’t go into medical school to help people have a better death. Even if they did, most medical school curriculums don’t adequately teach doctors how to address end-of-life care. As best-selling author Dr. Atul Gawande so eloquently wrote in his book, Being Mortal, “doctors, committed to extending life, continue to carry out devastating procedures that in the end extend suffering.”

What’s important to understand is that the American public’s sharply increased interest in end-of-life choice and care is not just about the passage of medical aid-in-dying legislation in our nation’s largest and most diverse state, California — it’s about a movement to demand choice and a cry for better options and improved care in our end-of-life health care system. To make this goal a reality, Compassion & Choices put together a federal policy agenda that is based on the IOM’s Dying in America report outlining the systemic crisis in end-of-life care. Think of the IOM report as the diagnoses of the problem and Compassion & Choices’ federal policy agenda as the treatment. Our agenda covers a range of issues from hospice and palliative care, to changing perverse payment structures that rewardunwanted medical treatment, to professional education of health care providers about end-of-life issues.

If you are interested in learning more, please join my colleague, Dr. David Grube, national medical director at Compassion & Choices; Brian Lindberg, executive director, Consumer Coalition for Quality Health Care; and me at theAmerican Society on Aging’s annual conference. Our session, “Come to Patient Centered Care: Translating Patients’ Wishes Into Federal and State Policy,” is on March 21 at 9:00am. If you have not yet registered, you can get a $50 discount to attend the conference by entering the promotion code PRSNTR50 when you register. We hope to see you there!

This blog was originally published by the American Society on Aging. Click  here to read it on the ASA website.