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For terminally ill in California, end of suffering is now in sight

  • KAISER HEALTH NEWS / TRIBUNE NEWS SERVICE

    Matt Fairchild, 46, on March 10 at his home in Burbank, Calif. Fairchild has advanced stage melanoma that has spread to his brain and his bones.

BURBANK, Calif. » Matt Fairchild, 46, is in near constant pain. Advanced melanoma has spread to his brain and bones. He takes 26 medications a day and rarely leaves his house except to go to doctors’ appointments.

Fairchild, a retired army sergeant, refuses to say he is fighting a battle against cancer, because he knows it’s one he will lose. He’s not sure how long he has to live, but he knows this: He doesn’t want to spend his last days in agony.

In October, California became the fifth state to allow terminally ill patients to end their lives with prescriptions from their doctors after months of contentious debate. Religious groups and disability rights activists fought against the law and tried unsuccessfully to get a referendum on the ballot to overturn it.

This month, the bill’s authors announced that the aid-in-dying law would take effect June 9.

Fairchild said he feels calmer knowing the law will become effective in just a few months. When it’s time, he said, having a prescription will enable him to say goodbye to family and die in his sleep instead of suffering through intense pain, nausea or seizures.

“It gives me so much peace of mind because there is a date,” Fairchild said. That means once they stop treatment, or run out of options, “I don’t have to worry about hurting.”

As the implementation date nears, medical groups, supporters, legislators and others are working to raise awareness of the new right-to-die law and ensure all terminally ill patients will have access to it. They are holding webinars, panels and town hall meetings, distributing information and setting up telephone lines. And they are encouraging patients like Fairchild to discuss with their doctors whether a lethal prescription might at some point be right for them.

Democratic state Sen. Bill Monning, one of the authors of the law, said he was pleased that it now has an effective date and patients will have the option to avoid “insurmountable pain and suffering.” The forms are already in place and Monning said he expects patients to begin coming forward.

“There are families who have been calling us wanting to know if it will be available to a loved one,” Monning said. But he acknowledged that some may not make it until June. One of the law’s most ardent supporters, former Los Angeles Police Department Sergeant Christy O’Donnell, died last month of lung cancer.

“There are going to be people in these 90 days who unfortunately won’t be beneficiaries of the act,” Monning said.

Compassion & Choices, an assisted suicide advocacy group that pushed for the law, recently launched a bilingual campaign, a speaker’s bureau and a free hotline for people who want more information. The group also has a confidential consultation program for doctors.

The organization is sending out volunteers to saturate the state and get the word out, said Kat West, its national director of policy and programs. But there is a lot of work ahead,” she said. “It is one thing to pass a law,” she said. “It is a whole other thing to have access to that law.”

Under the law, patients can get fatal prescriptions only if they are mentally competent and have six months or less to live. To get the prescription, a patient must submit two oral requests — 15 days apart — to the attending physician, and one written request.

Wolf Breiman, who has two types of cancer — tongue and blood — said he is not yet considered terminal but plans to get a prescription when eligible. Breiman said he thinks he won’t use it unless his suffering becomes so bad it overcomes his will to live.

“I am 88 years old and I have got two cancers,” he said recently from his home in Ventura. “You can imagine why I am very interested in having this law become accessible.”

Breiman said he feels less anxious knowing that June isn’t far off. The retired landscape architect is in the middle of eight weeks of radiation for the mouth cancer, which leaves him exhausted and makes it difficult to swallow. “I’m hoping I will be OK until this becomes available,” he said. “I might be able to spare myself a great deal of suffering.”

California follows Oregon, Washington, Vermont and Montana in approving lethal prescriptions. Despite the experience of other states, it still is unclear how the law will play out in California, said Ben Rich, an emeritus professor of internal medicine and bioethics at the UC Davis School of Medicine. He said he expects some health institutions to be supportive and others to be unsupportive, leading to inconsistency around the state.

Either way, Rich said he doesn’t think the law will result in a large number of physicians prescribing the medication. “But it does mean that many, many more physicians are going to have to figure out how to talk to patients when the patients raise the question,” he said.

“Physicians are going to have to either bring themselves up to speed on end-of-life options … or they need to know where to refer patients.”

Medical groups have already started educating their members about the law and other end-of-life options. The California Medical Association issued a document earlier this year that explains to doctors and patients how the law works. It answers questions such as, “Does The Act Specify What Aid-In-Dying Drug Can Be Prescribed?” (no) and “Can An Interpreter Be Used?” (yes).

Ted Mazer, an officer of the association, said doctors across the state are grappling with their feelings about the law and whether they will be comfortable prescribing medication. Personally, Mazer said he wouldn’t refuse to participate but believes that if the terminal illness is cancer, it might be more appropriate for an oncologist to do so.

“This is soul searching,” he said. “Doctors will have to decide, now that this is here, what do they do when a patient is terminal and there is nothing more for them?”

The California Academy of Family Physicians is putting information for members on its website and producing podcasts that feature family physicians sharing patient stories and explaining the need for good end-of-life care.

Jay Lee, president of the association, said there is still a lot of uncertainty about the implications for physicians. But he said they will play an important role in helping ensure there is equitable access to the law across ethnic and socioeconomic groups in California — and that patients understand all their choices, including hospice and palliative care.

Lee, a family physician in Orange County, said he believes the law is already leading to more conversations about the end-of-life in general.

“The law has triggered a lot of focus on an area of health care that for many was really taboo,” Lee said. “Physicians didn’t feel really comfortable bringing it up.”

Matt Fairchild said he plans to talk soon with his oncologist about the aid-in-dying law. “I want to make sure he knows that it is there,” he said.

Fairchild was diagnosed with cancer in 2012 after noticing a mole under his earlobe had gotten bigger. He had surgery and thought he was clear, but soon after, doctors told him the cancer had spread to his lymph nodes — and then throughout his body.

For nearly four years, Fairchild has undergone treatment, including radiation, chemotherapy and immunotherapy. Sometimes he feels like he is in a game of Whack-A-Mole, trying to beat it down in one site before it pops up in another. He knows the treatments can only lengthen his life — not save it.

Before the law passed, Fairchild said he would have considered taking his own life if he were dying and in too much pain. But he said, that’s a “quiet, cold way to die.” Now with the new law, he said he hopes that death will be more celebratory and peaceful.

“I don’t want to hurt ever,” he said. “I can’t fathom the idea of being in pain and not having a way out.”

Fairchild, whose face is pale and stomach swollen, spends his days at the apartment he shares with his wife. A calendar hangs from the kitchen wall, with his appointments for brain scans and blood tests and infusions scribbled in small squares.

On a recent afternoon, his cats purring nearby, Fairchild sat down on a recliner chair in front of the television. He pulled out pens and a grown-up coloring book. The title: “Color Me Calm.”

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(Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.)

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©2016 Kaiser Health News

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  • “California follows Oregon, Washington, Vermont and Montana in approving lethal prescriptions.” This bit of information was halfway down the article. Maybe it needed to be near the top. It says Kaiser was the originator of this news. Pretty good, Kaiser does good work. My brother has Kaiser. I don’t, at the moment, have any coverage.

  • …insurmountable pain and suffering? As a former hospice professional for several years, that has not been my observation. Palliative care is very effective in ameliorating pain and suffering where at the point of death, a peaceful and dignified death is the norm rather than the exception. Passage of such a law is based on people’s fears and misinformation.

    • Bull-S-fighter you did not experience the pain and mental agony. Speak for yourself, not others. The law to have the right to end ones life when terminal is long overdue! There is no dignity is slowly wasting away.

      • allaha, what experience do you have that you base your comments on? I’ve seen many people die with dignity with the use of pain medications. I’ve been at their bedside along with their family members when they passed a peaceful death. If you’re going to comment, do not do so out of ignorance.

        • I agree with Allaha. There are MANY cases where hospice does not work out in reducing pain and suffering because the Dr at the hospice refuses to give the levels of morphine needed to alleviate true pain and suffering because then that would be considered assisted suicide. In the meantime, while they are at hospice they die a lingering death that family members who are at their side will never forget. That is a FACT for some.

        • inverse, I don’t get why it is so hard for some people to consider that individuals can make their own decisions on their own terms.

          Funny how the anti-nanny state people are some of the adamantly anti-end of life freedom and choice. Apparently, it’s wrong for the state to tell you how to live, but god forbid you exercising any freedoms or choices over how you go out.

          I think it’s a horrific crime to make people suffer out their last days with no quality of life against their and their family’s wishes. But hey, that’s the Libertarian speaking and we all know how much the Republicans on this board hate that.

      • God FORBID giving people freedoms and choices to make their own decisions in life!

        Amazing isn’t it how the right leaning members of this board are some of the most dictatorial scum who don’t believe in anyone having freedoms or the capacity to make their own choices.

    • For a former alleged professional, you seem unaware of the difference between hospice and palliative care. Palliative is for people who have a chance at recovery and many do. Hospice is for those who are going to die. Do not confuse the two which is amusing as you are against the bill on fear and misinformation, yet here you are doing the same thing.

      IMO, there is no reason not to have this. Why should someone be forced to live out their hospice care on a huge drug concoction, driving up their costs for themselves and their families (and taxpayers), in pain with no quality of life? People are mature enough to know when, if they want, to go on their own terms.

      It is a huge injustice to force those to live out their end days in pain because you refuse to treat them as adults.

      • choyd – FYI. Palliative care focuses on providing people with comfort and relief from the symptoms and stress of a serious illness INCLUDING terminal illness. Anyone can receive palliative care to deal with an illness including hospice patients who are given a 6 month prognosis to live. Keep on writing – it only demonstrates your ignorance as hospice patients can and do have quality of life.

        • I don’t know what “medical school” you went to, but palliative is specifically oriented to those who have a chance at recovery. You are classifying palliative to mean the same thing as hospice to which it is not. People don’t go into palliative during the last days, they go to hospice. You know this but you keep spreading misinformation.

          And you are forcing your views of what people should do rather than letting them act like adults and deciding their own futures.

          Keep ignoring my points and questions, it shows just how tyrannical you are about allowing others to have a choice and freedoms about how they spend their last days. Like I said, the right leaning members of this board are some of the most dictatorial scum who don’t believe in anyone having freedoms or the capacity to make their own choices.

  • Why so much trouble just to die? No need pills, powders, syringe and needle, or permission. No need to fill out forms. Just swallow a revolver and pull. So simple and economical. So fast you can’t feel pain.

  • Doctors and hospitals still do not do well in dealing with terminally ill patients despite attempts to change their attitudes. Often times they turn their backs on the terminally ill
    as they do not want to face the fact that they are not going to be of any help in terms of “saving” those that are dying. Hospice”s do a way better job and the fact that they exist
    is a blessing but people still do fall thru the cracks and are left to the tender mercies of doctors and medical staff who do not want to deal with the terminally ill.
    Allowing the terminally ill to have the choice as to when they decide to end their lives is a wonderful option and should be legal everywhere.
    Anyone unfortunate to see this occur with a loved one or yourself understand that ending one’s life when one is faced with a terminal situation is your right to decide on your own
    without government interference. It is time this option was available to those here in Hawaii.

    • Agree 100%. Often the Hospice doctor is worried about giving too much morphine to a terminally ill person because then they would be perceived as a providing a medically assisted suicide. This often will happen when the terminally ill person CANNOT verbalize their suffering. However family members who sit next to their loved one for almost 24 hours a day and know them all their life knows they are suffering. So what happens is even though the family members beg the Hospice doctor to up the pain meds to a level of unconsciousness to end the suffering, the doctor will refuse and only considering upping the morphine doses until there is enough days of suffering that will legally cover the Hospice doctors liability in preventing anyone from accusing him/her of medically assisted suicide.

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