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ADVOCACY IN ACTION

Endorsers, messengers, allies: These are some words that describe the essential role that other groups and individuals play in Compassion & Choices’ work. Consumer brands use spokespeople, presidential candidates have surrogates, and businesses form associations — it’s how you strengthen your voice and expand your reach when you’re working toward any kind of change.

Take, for example, C&C’s federal agenda for achieving person-centered, family-oriented end-of-life care. There, our efforts are strengthened by like-minded policy and advocacy organizations. One is the Leadership Council of Aging Organizations (LCAO), of which C&C is among its 72 nonprofit organizations who share the goal of providing a voice for seniors and their families in the ongoing national debate on aging policy. C&C’s voice is amplified by our partnership with these allied groups.

C&C is also a proud member of the Leadership Conference on Civil and Human Rights, whose 200 members seek to protect and empower all people, which is exactly C&C’s goal in the context of endof-life healthcare. Participating in this coalition has connected us with representatives of disability rights groups and faith groups whose partnership can help us build greater understanding with new audiences.

The Campaign to End Unwanted Medical Treatment is a very special national coalition comprised mainly of organizations representing consumers, and C&C’s work has benefited tremendously from being a founding member of this 19-member coalition. Many of the groups represent aging Americans. One important recent achievement was getting Medicare to reimburse doctors for talking about advance planning with their patients.

In our state campaigns to advance aid-in-dying laws, allies and endorsers are indispensable, especially when they come from the healthcare field. Our Doctors for Dignity program is one way C&C enables physicians to tell legislators, journalists and their fellow doctors why they believe aid in dying is a good medical option for some terminally ill people.

In New York we recently launched an effort inviting our supporters to ask their doctors to join the campaign to help pass medical aid-in-dying laws. We also have a growing number of physicians adding their names to a sign-on letter for legislators in Albany.

In Massachusetts, three physicians who have been advocating for the state’s Compassionate Care for the Terminally Ill Act published a letter to the editor in Vital Signs, the monthly publication of the Massachusetts Medical Society. In it they wrote, “Doctors and medical societies should debate and reconsider their positions on aid in dying.” They also asked whether the Massachusetts Medical Society’s opposition to aid in dying truly represented the views of its membership. Then, in the next issue, another Massachusetts doctor published a letter saying he sees opposition to aid in dying waning, especially among older doctors. He concluded by echoing the call for the Massachusetts Medical Society to reconsider its position.

State medical societies are chapters of the American Medical Association, which officially opposes aid in dying. (This, despite the fact that the majority of American physicians, the American Medical Women’s Association and the American Medical Student Association all support aid in dying.) There are local chapters of these societies, and they, too, can change their positions. In Colorado, for example, both the Boulder and Denver medical societies have endorsed similar legislation for medical aid in dying; this could eventually encourage the state chapter to reverse its opposition.

Medical societies function as the voice of physicians in every state, and their opposition makes passing an aid-in-dying law difficult. When they take a neutral or positive position, however, it changes the dialogue. That is what happened in California last year: When the California Medical Society withdrew its opposition to the End of Life Option Act, serious consideration began, and the bill was on the governor’s desk in a matter of months.

Now in California, C&C is partnering with other groups of medical professionals to make sure the law is properly implemented and widely available to eligible terminally ill Californians. Notably, when C&C held a press conference announcing the launch of our California Access Campaign, it was hosted by the California Primary Care Association (CPCA). The CPCA is among a group of community health centers, hospitals, medical and hospice facilities, and nonprofit organizations. Now they are helping to ensure that Californians know medical aid in dying is an available and trustworthy end-of-life choice.

High-profile individuals are also particularly effective messengers and validators. Jeanne Phillips, popularly known as “Dear Abby,” is one of C&C’s most passionate supporters. She has spoken at conferences and other events, and was an outspoken advocate in her home state of California for the End of Life Option Act. She has said that because of deaths in her own family, and hearing so many painful stories from readers of her column, she has concluded that people who are facing a terminal illness should be able to make their own end-of-life choices that make sense for them and their families.

Archbishop Emeritus Desmond Tutu said he came to support aid in dying after watching his good friend, Nelson Mandela, endure multiple painful hospitalizations before dying at age 95. Tutu put it simply: “People should die a decent death.”

More recently, award-winning radio talk show host Diane Rehm took a public position in support of medical aid in dying after watching her husband’s drawn-out, painful death. His end-of-life suffering from Parkinson’s disease was so severe, he opted to refuse all fluids and nutrition to bring about his own death. Rehm writes in her new book about the weeks leading up to his decision: “I could do nothing but listen as he railed against a medical and judicial system that prohibited a doctor from helping him die, even knowing that what awaited him was prolonged misery, further decline, and, to his mind, loss of dignity.” Because she shared her late husband’s frustration with a system that will not permit a dying person to pass mercifully, Rehm became a very outspoken and persuasive messenger for medical aid in dying.

Of course, fame is not a prerequisite for being an effective spokesperson on end-of-life issues. Barbara Mancini, a nurse who lives in Philadelphia with her family, is a great example. Her arrest and prosecution on the charge of aiding the attempted suicide of her dying 93-year-old father, and the subsequent dismissal of her case, has led her to become a fierce advocate for end-of-life autonomy.

Mancini is one of thousands of Americans who think we should all have more power over how we live our final days, months and years who partner with C&C to help get that message out. If you share that view and want to become a messenger too, let us know!