Wrapping up the Massachusetts Death With Dignity Defeat

 sunsetcloudsDeath – the last sleep? No, it is the final awakening.

–Sir Walter Scott

Now that the dust has settled around the Massachusetts ballot initiative for Death with Dignity, and the opposition and the proponents are preparing for the next battles in New Jersey, Connecticut, New Hampshire and Vermont, I’m going to provide excerpts from articles released in November leading up to the vote and its defeat to see what happened.

An interesting thing about this emotional argument is all the different players involved so I’m going to present their perspectives according to the articles leading up to the Massachusetts vote… with the caveat that I’m in favor of a Death with Dignity law but not particularly of the one that was proposed in Massachusetts or the ones that currently exist in Washington and Oregon. I will reserve my opinion for a subsequent blog post. So in alphabetical order–

THE DISABLED COMMUNITY

According to Second Thoughts (People with disabilities opposing the legalization of Assisted Suicide) director John Kelly, the only way for the law to be acceptable to them would be to make the safeguards so exacting that no one could get past them.

• They fear heirs might pressure their relatives to end their life early and with dementia they might relent.

• They stress people with mental illnesses,  including depression, are unable to make these decisions.

• They fear someone putting something into a feeding tube without the person’s knowledge.

• They fear wanton killing of  sick elderly and handicapped, disabled, challenged people as was done in Nazi Germany because they were considered unworthy, too expensive and too much trouble to take care of.

Second Thoughts contends that:

• Assisted suicide is a deadly mix with a profit-driven healthcare system. Pressure to cut costs, delays in treatment and limited coverage for home care can lead patients, families and doctors to choose the cheapest alternative, even if that is assisted suicide.

• Assisted suicide is unnecessary because current law gives every person the right to refuse lifesaving treatment, and to have adequate pain relief, including palliative sedation to die in your sleep. Assisted suicide decreases self-determination by giving doctors and insurers the power not just to cure, but to kill.

• The proposed law is a recipe for elder abuse. An heir can be a witness and help sign someone up, and once a lethal drug is in the home, no one will know how the drug is administered. If the person struggled, who would know?

•A lack of safeguards and oversight in the proposed law puts people at risk of misdiagnosis, deprivation of treatment and economic pressure to choose suicide, while protecting doctors from liability.

  • No mental health evaluation is required for depression or other treatable cause of suicidal feelings.
  • If a doctor refuses lethal drugs, the patient or family simply can—and do—find another doctor (“doctor shopping”).
  • “Terminal condition” and “death within six months” are often misdiagnosed, opening the dangers of assisted suicide to many who are not terminally ill.
  • Nothing in the law can offer protection when family pressures, whether financial or emotional, distort patient choice.
  • The law does not include enforcement provisions, investigation authority, oversight or data verification. The only foolproof safeguard is for the prescribing doctors. The law holds doctors only to a “good faith” standard, which makes any safeguards unenforceable.

• Discrimination: A law that singles out some people (such as old, ill and disabled people) for assisted suicide instead of suicide prevention is not in step with Massachusetts’ progressive tradition as a leader against discrimination.

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A writer commented– “Now is the worst time to perpetuate that death is better than disability.”

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Not Dead Yet Director Diane Coleman praised Second Thoughts Director John Kelly and the Steering committee for inserting the disability rights perspective into the Massachusetts debate. Coleman said Second Thoughts made the difference in preventing assisted suicide from gaining a foothold in the Northeast.

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A woman now confined to a wheelchair because of her MS, which she described as “the slow road to death,” was opposed to voluntary euthanasia until recently. ”As little as five years ago, I really did believe that without safeguards, voluntary euthanasia could be open to the terrible abuse of the elderly and the vulnerable in our society. I felt that quite strongly.” But she had no idea her illness would go into such a steep slide, prompting a ”drastic change in my feelings” about voluntary euthanasia. Now with her new consciousness, she wonders why it is illegal. ”If I’ve got a suffering animal, I won’t hesitate to have them euthanised,” said the keen horsewoman.

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Tony Nicklinson (58), a former soccor player in England, who developed locked-in syndrome following a stroke in 2005 and could only move his eyes, fought for the right to die by doctor-assisted lethal injection.  When his last request was turned down by the High Court in August, he felt his only alternative was to stop eating and drinking thus starving himself to death. Tony developed pneumonia and died a week after the verdict. His wife, Jane, and other people with locked-in syndrome, are continuing to pursue a change in the law to allow euthanasia for people like Tony who are incapable of doing it for themselves and need professional assistance.

THE DYING ONES

These are excerpts from various articles, letters, blogs by people who are or were in the process of dying:

“To end this suffering is not euthanasia. It is a display of pure love and decency for a fellow human through assisted suicide, and an acknowledgment of his own written wishes.”

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“It is not a choice between living and dying, but between different ways of dying.”

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“I don’t know if I’ll use the prescription but I know it’s there, just in case I decide I do. It gives me peace of mind.”

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“It’s not that I’m depressed, I’m just fed up and frustrated,” Ms Harrison (New Zealand) said. “I’ve had such a wonderful life, travelled widely, with glorious memories and now I have no control over my life whatsoever with much worry and anxiety. I am living in such despair. I want to go. I’m quite happy to go. I have no fear of death whatsoever. My one fear is, because I have spent the last 3 years in bed, that I’ll suffer a stroke or other medical disability and my wishes will evaporate with my physical or mental agility. If euthanasia was legal, I could spend more time alive without worrying that I must terminate my life as soon as possible before anything drastic happens.”

Ms Harrison has lived with MS for more than three decades but says the deterioration of her condition in recent years has made life unbearable. Confined to the living room that was once the bustling centre of her family home, she relies on her 26-year-old son, a member of the Army Reserve who is studying for his masters degree, as her primary carer. “All my loves . . . I loved nature, I love books, horseriding. Everything is now lost to me,” she said. “I have to cope daily with double incontinence, gripping spasms and physical and nerve pain, to say the least.”

As a member of Philip Nitschke’s right-to-die group Exit International, Ms Harrison had planned to travel to Dignitas. However, difficulty in obtaining paperwork led to delays and this year she fractured her femur, making the trip impossible .”I wanted to do it properly, to die in the company of friends and with dignity, I didn’t want it to be ‘suicide’,” she said.

EHTICISTS

“While I’m certainly someone who believes in increasing and furthering and advancing patient autonomy, I think that there are a lot of problems with the current ballot initiative. Primarily, the potential problems in having this initiative without any mandate for psychiatric evaluation.”

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“Euthanasia, also known as mercy killing, is the act or practice of deliberately killing a dying individual, who no longer wants to tolerate pain and suffering, in a relatively painless way. Physician assisted suicide, on the other hand, takes direct control out of a doctor’s hands. The doctor presents the patient with the means to end his life. Both issues are extremely controversial in the world of bioethics.” (Bioethicist)

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“The only really difficult ethical question surrounding assisted suicide is how we can ensure that an individual’s desire to end their life is the genuine, settled, free choice of a mentally competent individual. Of course, therefore, there must be safeguards in any future regulation of assisted dying. But as long as stringent safeguards are put in place, it is difficult to see the ethical case against it being provided at all.”

FAMILIES

“Those who have witnessed the agonies of a loved one in the final stages of ALS, MS, cancer, dementia, etc., will tell you that when there is no dignity nor purpose left, then the choice should be the patient’s.”

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I had a million questions about how he expected Ed’s decline to progress and I needed advice regarding the multitude of issues involved in end-of-life care. I wanted to know about ventilators, antibiotics, DNR (do not resuscitate) orders, living wills and so many other things. I also wanted to know how much longer he thought Ed might live, what specifically he might die of, and what signs I should look for that would indicate the end was imminent. And I had a lot of questions about hospice care, including whether I could stop it if I changed my mind later. (He told me I could stop it at any time, for any reason, and that if I changed my mind again, I could resume the services.) The conversation was incredibly stressful. At one point I realized I was holding my breath.

After answering all my questions, Doug looked at me kindly and said, “You know, Marie, the real question for the caregiver is how to help the patient have the highest possible quality of life in the time that is remaining.”That completely changed my thinking about the situation. It gave me a new and positive goal – to bring Ed as much happiness as possible. It led me to think about all the special things I could do for Ed — visiting him more often, taking my little Shih Tzu to see him, having that violinist come back and play another concert, reading to him from the New York Times, and buying him even more of the stuffed animals he loved so much. After that talk, I spent many hours pleasantly thinking up special things to do for and with Ed. Once I got my mind off his looming death, we were able to have a beautiful, pleasurable months-long conclusion of our life together.

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But in focus groups support took a nosedive when participants were told the measure did not require mental health specialists to sign off and did not mandate that family members be notified. When told that one of the common lethal prescriptions required patients to break up 80 to 100 capsules and stir their contents into a drink, support waned. People didn’t find that very dignified.

They also recoiled at the idea that the prescription would be obtained from a local pharmacy and ingested without supervision. As one guy said, ‘So, I’m waiting in line for my Sudafed and some guy waiting in front of me is trying to kill himself?” The research informed a series of powerful ads, including one featuring a pharmacist warning of the dangers and pouring out a bottle of red pills that skittered into a glass dish.“No doctors, no hospitals, just a hundred of these,” the pharmacist in the ad says. And they call that death with dignity?

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Although I asked point blank what to expect, I was told not to worry, mum would simply spend more time asleep and quietly pass away. If only. The weeks over which my mother passed away were a drawn out and traumatic experience that I would not wish on anyone. Several times I tried to get information about what would happen, from all the places you might expect, but none of it cut the mustard. It may be difficult to predict exactly what will happen in individual cases, but we weren’t even told about what might happen and how to prepare for it. Even when it was staring everyone in the face, there was little mention of the elephant in the room. Instead, the stark reality of what was happening was glossed over by those whose honest advice we might have benefited from. I’m sure our family is not alone, and although we may not all want such detail about what happens during death, most of us would admit we need to know it, however hard that might be. Informative conversations about the end of life give patients a better quality of life and help families cope with their bereavement.

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Thomas sat across from me on his sofa, holding his wife’s living will and health care proxy in his hands, still wondering if he chose the right time. Could his wife have changed her mind? Sure, she could have lived weeks or months more, perhaps, but would she have wanted that if she were able to choose?

His wife’s living will did seem to cover such a scenario, though typically such a document applies to a patient who is in a vegetative state rather than one who is conscious and talking (but not making any sense). Hers read: “If I have an incurable, irreversible condition that will cause my death within a relatively short time…I direct the withholding or withdrawal of all treatment, including nutrition and hydration, that only prolongs the process of dying.”

“I was very fortunate to have met Judy,” Thomas said of Schwarz, explaining that she had “held my hand through this process and provided advice that wasn’t coming from anyone else.” Still, Thomas is angry that the American medical system isn’t set up to deal with the complexities of the situation he faced.

“There aren’t a lot of guides for this process,” he said. “You would hope your own physician is [a guide], but they are there to treat you.”

“What am I doing?” she asked my father several times. “Life is not worth anything like this.”

Her hospice nurse was part of a team sent by Hospice and Palliative Care, which also included a doctor, a social worker and a rabbi. I was told when we met last spring that my mom’s quality of life had been deteriorating as April dragged on. She said my mom had told her, “I’m ready.” But my mom knew better than to ask a hospice nurse for help with that task. The goal of hospice is to keep the dying patient as comfortable as possible until death naturally occurs.

The associate chief medical officer told me that if a patient decides on her own to stop nourishment, medicine or machinery, no one will stand in her way.

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For months afterwards, George lay in bed, helpless and wasting away, with 24-hour nurses who washed and fed him and changed his diapers. He was lucid, and asked my mother and her sister to poison him. They told him they couldn’t do that, but my aunt Nina pointed out that his medicine was probably keeping him alive. Ending his life merely by omission hadn’t occurred to him.

“It was humane to put him out of his suffering but done through his choice,” Aunt Nina told me recently. “He certainly acted on that information pretty quickly.”

He died a few days later.

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The week she started hospice care, at the beginning of April 2011, my father contacted them. A few days later, they got a call from the clinical coordinator of Compassion & Choices, who lived nearby on the Upper West Side. She came over and spent a few hours talking with my parents, explaining her organization’s mission and discussing my mother’s illness and the options available. “She was warm and it was personal,” my father said. “She was a professional who is very skilled at dealing with situations like this.”

 The first thing she did was set me straight on the terminology when asked about “assisted suicide.” The term “suicide” has a lot of baggage whether religious, legal or moral, so to call it “assisted suicide” or “euthanasia” is to miss a crucial distinction.

We use the term ‘aid in dying because it more accurately reflects the information and support we provide to terminally ill and suffering clients”—information about how patients might control the circumstances or timing of their death. She went on to say that the motivation for suicide, which often results from mental illness and depression, is another thing entirely. We do not support suicide,” she said, noting the difference between suicide and the “thoughtful and considered decisions” made by some terminally ill patients as a means to avoid further suffering.

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Although Thomas’ wife was concerned about how this decision might affect her family members, it’s what she wanted to do. They got the lethal dose of medicine ready for when she might decide she needed it. But not long after preparing the dose, the cancer spread to her brain and she became unable to make the decision on her own. “So that plan went out the window,” Thomas said.

Even if his wife had been capable of deciding, Thomas wonders whether she would have made the decision to take the lethal dose, after all. “What point have you crossed where you truly don’t want to live in the situation any longer?” he asked. “It sounds more clear-cut when you are talking about it in the abstract than when you’re actually faced with it.”

Nevertheless, in a state of dementia, with hallucinations of snakes, Thomas’ wife was certainly not getting much in the way of dignity or quality of life. So after nearly 44 years of marriage, he decided to stop offering liquid when she stopped asking for it.

“She wasn’t able to consciously express the desire to die,” he said. “I acted on what I believed her wishes would have been.”

It took over a week before she fell into a coma and died.

HOSPICE/PALLIATIVE CARE

Patients would not be required to consult with a palliative care or a hospice expert. Hospice addresses the multifaceted distress that dying patients and their friends and families are experiencing by providing extensive palliative care, expert pain management, and extraordinary social and spiritual supports.  Hospice works with the patient to design a program that is individualized for the patient and provides choice, control and dignity when most needed.  Unlike even a few years ago, appropriate medical care is now able to keep patients comfortable and pain free. When the Oregon law was first passed, hospice care was only a glimmer of what it is today. Even though hospice services are now widely available, they are infrequently accessed.

PROCESS: Before care is provided, hospice staff meets with the patient’s personal physician and a hospice physician to discuss patient history, current physical symptoms, and life expectancy. They then meet with the patient and their family to discuss the services provided, pain and comfort levels, support systems, financial and insurance resources, medications and equipment needs. The patient must have a doctor’s referral to enter into hospice. Medicare covers all services, medications, and equipment related to the illness for patients with a prognosis of 6 months or less. (Source: http://www.hospicefoundation.org)

BENEFITS OF HOSPICE CARE: The use of hospice care can offer benefits to not only patients but their family members and loved ones as well.
1.    For terminally ill patients, the decision to receive hospice or palliative care instead of continued curative treatment can help them avoid the dangers of over-treatment.
2.    Hospice can reduce anxiety in the terminally ill patients as well as their family by helping them achieve some level of acceptance.
3.    Other than the focus on the physical health and comfort of the patients, hospice also focuses on the emotional needs and spiritual well-being of patients and their families.
4.    In-home care from a hospice IDT often means the patient receives greater monitoring than he or she would in a hospital. (Source: http://www.helpguide.org)

HELP FOR FAMILY MEMBERS:  The death of a loved one can be a difficult time and another benefit of hospice care is the support offered to family members after a patient has died. The bereavement support is when the hospice care team works with surviving family members to help them through the grieving process. This can include counselor visits to the family during the first year, support groups, and phone calls or letter contact with the family.

LAWS, COURTS

Sadly, many still believe that those living wills filled out years ago offer us some protection. They do not. We have progressed with the development of representation agreements and advanced directives, but the legal system still hovers threateningly. The author of such a directive – now in no fit state to demand execution of his wishes – must still face each day as a living hell.

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Death With Dignity Act – the state secretary, “This proposed law would allow a physician licensed in Massachusetts to prescribe medication, at a terminally ill patient’s request, to end that patient’s life. To qualify, a patient would have to be an adult resident who (1) is medically determined to be mentally capable of making and communicating health care decisions; (2) has been diagnosed by attending and consulting physicians as having an incurable, irreversible disease that will, within reasonable medical judgment, cause death within six months; and (3) voluntarily expresses a wish to die and has made an informed decision.”

There are, of course, a number of other safeguards built in, such as the need to make the request twice, separated by 15 days, in the presence of witnesses.  However, there could probably be stronger safeguards to protect individuals who are experiencing depression and anxiety, and might have preferable alternatives to physician-assisted death.

If passed on Election Day, physician assisted suicide would become legal under Massachusetts law, effective January 1, 2013. No additional legislative or other approvals would be necessary.  As written, the legislation is poorly written and lacks the basic safeguards against unintended consequences.

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Law is to make sure the assister isn’t prosecuted for helping a terminally ill person who wants to die carry out their wishes– not to determinate rightness or wrongness of the act of helping someone hasten their death. -dg

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In Montana, physician assisted suicide is not explicitly legal, but a state Supreme Court ruling gives legal protection to it.

The Montana Board of Medical Examiners has rejected a request to strike its policy on physician-assisted suicide that opponents criticize as too permissive. The board this year tried to provide some guidance to doctors on the issue that remains unclear in law. The board says it will review complaints on their merits if any are filed against a doctor for providing “aid-in-dying.”

Montanans Against Assisted Suicide says it wants the board to revoke that policy, saying it appears to condone a procedure that they argue is illegal. The board rejected the request on Friday, potentially paving the way for opponents to sue. The Montana Supreme Court in 2009 declared nothing in state law or precedent makes the procedure illegal. The Legislature has been unable to provide any further clarity.

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“Assemblyman John Burzichelli (NJ) introducted a bill modeled on the Death with Dignity Act legislation of Oregon and Washington. It is doctor-assisted suicide, NOT euthanasia. As a humane society we do not force animals to suffer an agonizing death. Why should we not be given the option of having that same right if that is our personal choice?”

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Gov. Peter Shumlin (VT) says he is confident that the Vermont Legislature will pass marijuana decriminalization and Death with Dignity or what opponents call physician-assisted suicide legislation this session.

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In recent years, Compassion & Choices has tried to do something about the shortcomings—or failure, in many opinions—of physicians to guide their patients through the dying process. David C. Leven, a lawyer and the executive director of the organization’s New York affiliate, has led the effort on the legal front.

“Why do you feel the need to urge doctors to diagnose dying?” I asked.

“Nobody tells them to,” he said. “Nobody reimburses you for that diagnosis.”

1997 Supreme Court ruling that individuals have no constitutional right to aid in dying. This ruling left it to states to decide the issue for themselves.

“We are over-treating people at the end of their lives,” Leven said. “People who are dying often suffer unnecessarily because they’re receiving aggressive interventions they may not want and don’t benefit from.”

The solution, in his opinion, is to provide patients with more information so that they can make informed end-of-life decisions that suit their needs. To this end, Leven helped enact New York’s Palliative Care Information Act, which took effect in February 2011. The act requires that doctors provide information and counseling to terminally ill patients who want it—which turns out to be most of them. But it seems that the vast majority of doctors don’t even know about the law. (In the group he spoke to at the hospital on Roosevelt Island, less than a quarter had heard of it.) Another problem is that some doctors may reject a legal mandate that tells them what to do with their patients, which is why the New York State Medical Society opposed the legislation. In Leven’s view, this shouldn’t be an issue because it is supposed to be part of a doctor’s job description.

“Doctors already have an ethical obligation to provide their patients with a diagnosis, prognosis, treatment options, and the risks and benefits of those options so that patients can make informed decisions,” he said.

Leven cited studies showing that a large percentage of doctors don’t have this conversation with their patients or don’t do it well. If they did, patients would be much better off, he said. For instance, when the big picture is explained to them and the options are reviewed, patients typically choose less aggressive treatment and opt more often for  palliative care and quality of life than for extending it. (Gawande made the same point in his New Yorker piece.)

Patients may get referred to hospice care, set up a do-not-resuscitate order, and put other measures in place to make sure that doctors don’t provide treatment against the patient’s wishes. (New York ranks 49th in the country in hospice enrollment.) The result, Leven said, is reduced medical costs, better quality care, and ultimately, a death that is peaceful and dignified; all from a simple conversation between the patient and his doctor.

Dr. Alan B. Astrow, Chief of Hematology and Medical Oncology at Maimonides Medical Center in Brooklyn, said he agrees that it is a doctor’s responsibility to have this talk with patients. But he told me he understands why they often don’t.

“Many doctors avoid having to tell the patient that things are not going well and that the patient is at risk of dying in the near future,” Astrow said. “It’s hard to tell people, and also patients don’t really want to hear that news.”

However, he does not believe that the solution is a statute ordering doctors to do this—a point he made in an article in the New England Journal of Medicine last year. Astrow instead favors “more training in how to discuss end-of-life care issues with patients.” (David Leven agrees that doctors need more training, and is currently working on a bill that would require all healthcare practitioners in New York to get training in pain management and end-of-life care every four years.) Astrow acknowledged, however, that even with training, such care will still be very difficult for doctors. He stressed that he does agree with the goals of the Palliative Care Information Act, which provides a path toward “good medical care,” but he doesn’t think a legal remedy is enough to bring about a change in the overarching medical culture.

Considering that most doctors still don’t know about the Palliative Care Information Act, which isn’t enforced unless specific complaints are made to the New York State Department of Health, Astrow does have a point.

This is why Compassion & Choices, with a national staff of forty, has been trying to pick up the slack, making information available to anyone who needs it. After all, roughly a million and a half Americans die of terminal illness every year.

“Too many people are having bad deaths,” Leven said, “and it’s in some measure because they don’t have all the information they should have.”

NURSES

If ratified, the ANA would join the American Medical Association in saying that the “clinician’s participation in assisted suicide is incompatible with professional role integrity” and that assisted suicide and euthanasia “violate the social contract the professions have with society.”  Both organizations have “vowed to honor the sanctity of life and their duty not to inflict harm.” The document acknowledges the “distress” nurses suffer when asked to participate in active euthanasia and assisted suicide, and asserts that limits to their commitment to the patient’s right to self-determination “do exist.”The nurse is not allowed to “administer the medication that will lead to the end of the patient’s life,” says the draft document.Even in states in which assisted suicide is legal – Oregon, Washington and Montana – the ANA directs nurses to refrain from participation, as doing so would violate The Code of Ethics for Nurses with Interpretive Statements. For anti-euthanasia advocates, there is cause for concern, however, in the section of the document on the “withholding or withdrawal of life-sustaining treatments (WWLST).

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Opponents of the proposal say doctors should never, as a matter of professional ethics, intentionally hasten the death of one of their patients, even one who is terminally ill. The codes of medicine and nursing ethics reject helping patients die.

PHYSICIANS

The AMA “strongly opposes any bill to legalize physician-assisted suicide” because the practice is “fundamentally inconsistent with the physician’s role as healer.”

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A difference between this proposal (called Question 2, which allows for physician-assisted death if a terminal illness is diagnosed with a prognosis of less than six months of survival) and some others is that there is no requirement for evaluation by a psychiatrist for depression before the lethal medication dose is administered. This itself is a fatal flaw.  (written by a psychiatrist)

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On being too aggressive trying to save patient, a doctor said: if you can’t save his life; sometimes, being a good doctor means learning to help people die.

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For Dr. Marcia Angell, a senior lecturer on social medicine at the Medical School and one of the initiative’s major public proponents, this question of autonomy and choice has a clear answer.“It seems to me that this most personal and faithful of decisions belongs with the patients and no one else: not the church, not the Mass. Medical Society, not the state, no one but the patient. And it hurts no one if the patient makes this choice,” she said.

Angell said that the experiences of those who have taken advantage of the law in Oregon shows that the availability of this choice is valuable, even if not used by many.“Good palliative care and assisted suicide—those two things are not mutually exclusive any more than the medical treatment of heart failure and heart transplantation. You use one when the other fails,” Angell said. “Allowing the most desperate of patients to have assisted dying to bring about a slightly faster, more peaceful death, does nothing to the other 99.8 percent of patients.”

“First of all, the totality of suffering at the end of life often involves pain, but it often reflects other reasons as well. For instance, air hunger in someone who has pulmonary disease, or sleeplessness in someone with so-called Lou Gehrig’s disease. So pain control is a major part of palliative care, but palliative care is broader than just pain control. The concept of “total pain” has been in the literature for years. “Total pain” includes physical pain but also involves spiritual or existential pain and psychological burdens. So there’s more to palliative care than pain control, and there’s more to pain than just its intensity.

In the clear majority — in most cases of, say, cancer-related pain — the figure that people quote is from studies applying a very simple three-step ladder that was developed by the World Health Organization: You can control about 90% of the pain in people with cancer. Now, I’m blending together different cancers, different stages and resting pain versus movement pain. But if you were to say: ‘Can you control most people’s pain with simple, non-invasive measures,’ the answer is yes. That’s been studied.

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As for people who have more difficult pain problems despite moving up the medication ladder, by providing a suitable nerve block or infusion, you can probably control the majority of the remainder. So the instances in which you have to choose between the patient’s being awake but in intolerable pain or being deliberately sedated to the point of unresponsiveness are very few.

If you talk to people who work in hospice or palliative care, terminal sedation is uncommon. – It’s wrong to oversimplify this. That’s why, as a program, although we have superb faculty who teach classes about end-of-life and palliative care issues, we’re not saying yes or no on Question 2.

I would say hypothetically, there may be an instance, exceedingly rare, where physician-assisted suicide is warranted. But in practice, in those infrequent instances where pain is hard to control, we now already can offer terminal sedation, where someone can be brought to a restful, sleep-like state by using medications. But even that is uncommon.

Preparing a living will and designating a health proxy before illness strikes or becomes advanced, promotes each person’s working through these issues in a thoughtful, unrushed way.

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Critics say the Death With Dignity Act as written does not provide enough safeguards against mentally ill people securing the drug or prevent patients from being coerced into killing themselves. There are also no rules regarding storage of the lethal pills once they’re brought home.

Furthermore, the Massachusetts Medical Society says that asking doctors to provide lethal drugs is antithetical to what healers stand for and goes against the Hippocratic Oath, a sort of medical code of conduct.

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As a retired clinical psychologist, I must note that there is a vast difference between the depression of a terminally ill patient, who realistically perceives his situation to be hopeless, and a physically healthy patient suffering from clinical depression.

In the case of a physically healthy patient who is clinically depressed, feelings of worthlessness and hopelessness are the product of inaccurate perceptions of self and circumstances — mental distortions produced by the illness itself. For such patients, treatment can produce marked improvement.The same cannot be said for terminally ill patients, whose feelings of hopelessness are, sadly, all too realistic and whose depression is often a normal response to a disheartening reality.

While the “counseling and caring” the doctor recommends can provide comfort to the terminally ill patient, they cannot change the reality of a patient whose quality of life has diminished to the point where each day is another round of frustration and pain, be it physical or emotional.

If I should become terminally ill, I would not want to cede to a third party the right to determine when my life is no longer worth living

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“With proper safeguards, this option is valuable for a very small subset of patients with terminal illnesses that would progress with unbearable physical or psychological suffering. The key is to have the right type of safeguards so only appropriate patients are given this option.”

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The Massachusetts Medical Society officially came out against the measure, arguing that, “the proposed safeguards against abuse are insufficient.” It’s difficult to determine exactly when someone’s six months would begin. More loftily, they reasserted the idea that “physician assisted suicide is fundamentally incompatible with the physician’s role as healer.”

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Assisted dying is best dealt with by preventing it from ever developing in the first place by giving patients the opportunity to talk with their physicians and families about how much care they want and offering them palliative or hospice care before being subjected to needless treatments in the first place. Most physicians and patients and their families would agree with this.

It is not surprising, however, that needless treatment can bring on the serious depression and hopelessness that in some patients can drive the desire for assisted suicide. It is hard, as it should be, and becoming harder all the time because of the rapid advances in medical science to decide when and what kind of treatment is “needless.”

Physicians usually make the judgment after considering all the possibilities that modern medicine can offer and then try to make the best medical and humane judgments, taking into consideration the patient’s prognosis and wishes. But sometimes physicians can be moved by the fear of malpractice suits for not having “done everything” and resort to over-treatment as a solution. This is called defensive medicine. It will continue, however, until the defects in the malpractice system are corrected and physicians are not penalized for using good judgment that is later seized upon as a reason for a malpractice suit.

But insurance plays a significant role in over-treatment as well because it isolates patients and families from the astronomical costs of over-treatment, making it easy for them to demand that “everything be done,” even when it is against the collective judgment of the physicians taking care of the patient. But once the decision to do everything is made, it sets in motion a steady stream of reports from CAT scans and laboratory tests and consultants that often create confusion that worsens patients’ feelings of hopelessness and loss of control.

There is a real danger that the insurance companies’ pressure on doctors to practice “economically” will subtly influence the decisions that patients, their families, and physicians make. Already physicians are under great pressure to practice medicine with severe “cost-saving” restrictions.

*

WebMD’s physician web site, recently surveyed 24,000 doctors – When asked if physician-assisted suicide should be allowed in some situations, 47% of doctors said “yes,” 40% said “no,” and 13% said, “It depends.”

RELIGION

Vote NO on Question 2,” reads a sign outside St. Stephen’s Parish in downtown Framingham. The message on a second sign is printed in Spanish. The Roman Catholic Church in recent weeks has spoken out fiercely against the ballot measure to legalize physician-assisted suicide and Catholic groups nationwide have donated most of the $2 million the opposition has raised this election cycle. Cardinal Sean O’Malley of the Archdiocese of Boston last weekend broadcast a special sermon to parishes across the state urging churchgoers to vote no on Question 2. Local parishioners last week said they agree. “It’s taking something that’s out of our control.”

*

Rabbi Andrew Vogel said Judaism unlike some other religions doesn’t take a black and white stance. The religion opposes suicide but encourages compassion, he said. He opposes the measure but encouraged Jews to make their own decision.

*

The flaws Meade cites include no mandatory family notification – and no mandatory counseling. Her allies include Boston Cardinal Sean O’Malley. In a video homily, posted on the cardinal’s blog, he makes it clear that he wants Catholics to vote no.  O’Malley says “We cannot ignore the impending legalization of physician assisted suicide as if it did not affect us. It would bring spiritual death, a cheapening of human life, the corrupting of the medical profession. PAS means making doctors nurses, pharmacists, friends, and society itself accomplishes in suicide.”

*

Rabbi Ronne Friedman of Temple Israel of Boston spoke in favor of the question during his Oct. 5 sermon, and he and four other reform rabbis have released a statement backing the measure.“There are a lot of people who want to know that it would be possible,” Friedman said Sunday in a phone interview. “It’s hard to imagine that level suffering if you’re not in that condition. They want to feel that if it’s intolerable, they have the right and permission to exit on their own terms. Just the knowledge provides a sense of relief.”

*

Imam William Suhaib Webb, of the Islamic Society of Boston Cultural Center, said that while the question has not been formally addressed during services, “religiously we’re pretty much in agreement as Muslims” against it.“We believe that every breath is a gift,” Webb said. “Every difficulty through that suffering is a means of purifying into the life thereafter.”

*

“It’s the wrong direction to go in,” said Bob Denning, 57, of Boston. Denning said that society was “looking for a quick fix” to suffering and that physician-assisted suicide was “immoral and a crime. The way the law is, it’s actually insulting to humans.”

*

The Rev. Walter Kim of Park Street Church, a Protestant church in Boston, said his church recently held a panel discussion on the question, which he opposes.“It’s a moral as well as a political issue,” Kim said. “If we created a culture that really took care of the elderly and gave them vibrant communities, we’d be greatly alleviated. ”The wording of the question “is so problematic it doesn’t enable us to speak with moral clarity,” he said. He added that the lack of safeguards makes it such “that you don’t even have to get to all the moral issues. This ballot is problematic.”

*

The Rev. Kazimierz Bem, pastor of the First Church in Marlborough, which is affiliated with the United Church of Christ, preached a sermon against the physician-assisted suicide question on Oct. 21. He said that educating the public was important and that he was moderator of a panel discussion held that same day at the church. Supporters and opponents sat on the panel, he said, but the choice is a clear one.“A person ravaged by disease has no less dignity than Michael Phelps in the swimming pool,” said Bem. “It is not up to us to decide when we go.”

*

The widow of Senator Edward Kennedy has joined a line-up of high-profile liberal Catholics opposing a referendum that would permit physician-assisted suicide in the predominantly Democrat state of Massachusetts.Victoria Reggie Kennedy voiced her opposition to physician-assisted suicide in an op-ed article in the Cape Cod Times, saying that Tuesday’s referendum would turn her late husband’s lifelong commitment to health care “on its head by asking us to endorse patient suicide – not patient care – as our public policy for dealing with pain and the financial burdens of care at the end of life.” Mrs Kennedy noted that when her husband was diagnosed with cancer he was given two to four months to live and survived for another 15 months.

*

According to financial reports filed with the state, the Archdiocese of Boston and some of its affiliated organizations, such as the Boston Catholic Television Center and St. John’s Seminary, spent at least $2.5 million to defeat the proposed law. He added that the American Principles Project, a national conservative organization, along with one of its founders, added another $500,000 to oppose the initiative.

*

In remarks to the assembly earlier in the day, O’Malley thanked his fellow bishops and Catholic organizations for their help in defeating physician-assisted suicide in Massachusetts, which he called a “terrible assault on human life.

”The Catholic church teaches that all life is sacred, from conception to natural death, and that suicide is always objectively wrong, though whether a person bears responsibility for committing suicide depends on his or her psychological and physiological state.

In his remarks, O’Malley pointed to the Netherlands, where doctor-assisted suicide is legal and where a group is now creating mobile teams that will offer euthanasia to patients at home, making lethal drugs more widely available to patients. The United States, O’Malley said, is a long way from that scenario, but only because voters in all but two states have held the line.

“What has put the brakes on the growth of physician-assisted suicide in the US is that more than 20 states have rejected proposed legislation and ballot initiatives,” he said.

*

The Archdiocese of Boston led the fight against Question 2, the ballot measure that would have allowed people with less than six months to live to obtain lethal prescriptions. The church helped build a diverse coalition of doctors, hospice workers, and interfaith leaders and helped raise more than $4 million, much of it from Catholic organizations and wealthy donors across the country.

*

On Tuesday the Roman Catholic Archdiocese of Boston did something it had not done for a while: It won a major political battle.The archdiocese and other Catholic donors supplied a significant share of the $5 million spent to defeat Ballot Question 2, which would have let terminally ill people obtain a prescription drug to end their lives. But the church did not win the fight alone. By Election Day a large, diverse coalition of opponents had united against the measure, including many Jewish, Christian, and Muslim clergy; palliative care doctors; hospice workers; and pharmacists.

Polls in early October suggested two-thirds of voters supported the ballot question. But on Election Day it failed by 2 points. Opponents outspent proponents by a factor of six.

“Physician-assisted suicide,” Cardinal O’Malley told the assembly, ”presents a moral and ethical threat to society, the medical profession, the disabilities community and the common good. It brings spiritual death, a cheapening of human life, and a corrupting of the medical profession. During the course of preaching and speaking about this issue, I often cited the Hippocratic Oath of ‘do no harm.'”Although the measure to legalize assisted suicide was defeated, the Church is nonetheless called to “become more focused on the fact that we must do more to promote good palliative and hospice care at the end of life.”

“The Church has always been committed to compassionate and dignified end of life care,” he said. “We must work with our hospice care and palliative care communities to continue to provide quality of care for the terminally ill. Fear of tremendous pain is advanced as a reason to support physician-assisted suicide. In almost every instance palliative care can suppress pain.”

The cardinal also reminded the assembly that “people already have the right to refuse burdensome, life-extending treatments. They also have the option of leaving advance directives to determine their care when they are no longer able to express their wishes. The death that results from withholding or withdrawing of life-sustaining treatment has always been separated by a bright line from active measures to cause death.”

“Assisted suicide proponents seek to blur this line,” he said. In preventing this measure from being passed, however, the Massachusetts prelate emphasized the importance of providing pastoral and medical care for terminally patients.

*

Some religious groups, of course, have starkly different ideas. The Catholic Church has been vocal in its criticism of assistance in dying and, particularly, of Compassion & Choices. Last year, the United States Conference of Catholic Bishops laid out its official position in a statement. The bishops make a range of well-worn arguments, including the sanctity of the Hippocratic Oath and how “suicidal” people need counseling, confusing the distinction between those who are truly suicidal—who do not want to live—and someone who is terminally ill, who wants to live but chooses to hasten their death because they can’t prevent it. The bishops also argue that allowing people to have a say in how and when they die will inevitably lead to abuse of the practice.

“Taking life in the name of compassion also invites a slippery slope toward ending the lives of people with non-terminal conditions,” the statement said.

RIGHT TO DIE

Death with Dignity 2012, the political action group supporting the measure, staunchly disagrees, saying people deserve to choose how they die.

*

Compassion & Choices provides information about end-of-life choices to help patients make informed decisions that reflect their personal values and wishes for care. They don’t provide the means. They don’t administer. They don’t encourage or coerce. They have no agenda other than to provide complete and accurate information about end-of-life options.

*

Final Exit instructs terminally ill people how to end their lives with helium and an “exit mask”—self-acquired and self-administered—and does not pursue legislative reform. The group has run into legal trouble in recent years, notably in Phoenix, Atlanta, and most recently Minnesota, for breaking state laws that prohibit assisting in suicide. Compassion & Choices has so far avoided such problems.

*

“For the past year, the people of Massachusetts participated in an open and honest conversation about allowing terminally-ill patients the choice to end their suffering,” said Compassion & Choices. “The Death with Dignity Act offered the terminally-ill the right to make that decision for themselves, but regrettably, we fell short. Our grassroots campaign was fueled by thousands of people from across this state, but outspent five to one by groups opposed to individual choice.”

The “Death With Dignity Act,” which aimed at allowing a physician licensed in Massachusetts to prescribe medication to a terminally ill patient to end their own life, lost 49% to 51%, according to election results.

In Massachusetts, 1,439,785 voters were against the proposal, while 1,382,651 supported the measure. In Boston, however, voters didn’t share the same sentiment as the rest of the Commonwealth. Hub voters favored the act, with 111,852 of those registered casting a “Yes” vote, compared to 107,377 who voted “No.”

“Even in defeat, the voters of Massachusetts have delivered a call to action that will continue and grow until the terminally-ill have the right to end their suffering,” backers of Question 2 said on Wednesday.

*

Compassion & Choices also debunks misinformation, like the idea that ceasing to eat and drink could be painful. It’s not. Terminally ill people typically don’t have healthy appetites to begin with, so hunger pangs are unlikely. Headaches are common at the beginning, but those pass quickly; thirst or dry mouth is the biggest challenge, but it’s more discomfort than pain, and there are ways to ease it.

“I never tell patients I’m going to help them have a good death,” she said. “What I say is, ‘Let’s work together to have the least bad death possible.’”

RIGHT TO LIFE

Some disability groups and religious organizations believe that the terminally ill who are disabled deserve better palliative care and emotional support rather than a prescription of deadly medicine. They also worry that people may feel compelled or coerced into choosing death because their care is expensive, they see themselves as a burden to others or because relatives are thinking that they do not want to spend the grandchildren’s college tuition to keep grandpop going in a nursing home or ICU. Given the current push to contain medical costs, the biggest fear is that the vulnerable will get the bum’s rush to the hereafter.

*

Few people know that there is not a provision in this ballot language requiring family members to be notified if their loved one decides to take his or her life, that doctors are not present at the end, and that a terminally ill patient can get this prescription filled at the local pharmacy. There is a misguided perception that somehow this all takes place in a medically supervised setting. In reality, there is no tracking of these pills once they are picked up and brought to the person’s home.

*

Patients would not be required to seek psychiatric care before obtaining the lethal drug.  Multiple studies show a connection between a terminal diagnosis and patients developing depression.  As it stands, no mental health professional would be required to be part of the consultative process. I don’t think that the fact that the cardinal is sending out a homily to people is changing poll numbers,” said Mark Horan, spokesman for the Committee Against Physician Assisted Suicide.
Horan said many voters agree the measure has flaws, such as no requirement to notify family members or for psychological counseling.

*

Harvard Right to Life stands for the right to life from conception to natural death,” HLR president Matthew R. Menendez ’14 said. “So it is our view that it is never right to voluntarily end a life, and so in that sense we are opposed to [the Death with Dignity initiative].”

*

Wesley J. Smith of Secondhand Smoke blog says opposition consists of:
•    Disability rights activists who see themselves and the elderly–rightly–as the targets of the movement;
•    Medical professional organizations are overwhelmingly opposed to legalizing assisted suicide.
•    Egalitarian liberals, such as Robert P. Jones, believe that assisted suicide threatens equality.
•    Pro-lifers offer a solid foundation of opposition from which to build a winning coalition.
•    Advocates for the poor who understand that assisted suicide could easily become a form of medical cost containment

*

The landmark 2009 report by MetLife Mature Market Institute describes elder financial abuse as a crime “growing in intensity.” The perpetrators are often family members, some of whom feel themselves “entitled” to the elder’s assets. The report states that they start out with small crimes, such as stealing jewelry and blank checks, before moving on to larger items or coercing elders to sign over the deeds to their homes, change their wills or liquidate their assets. The report states that victims “may even be murdered” by perpetrators.

With legal assisted suicide in Oregon and Washington state, perpetrators are instead able to take a “legal” route by getting an elder to sign a lethal dose request. Once the prescription is filled, there is no supervision over administration. The elder could be cajoled or coerced into taking the lethal dose, for example, while under the influence of alcohol. The lethal dose could be administered while the elder slept. If he awoke and struggled, who would know?

*

A Boston Globe poll in September showed 68 percent of voters in support and 20 percent opposed. In the end, the margin of defeat was 62,000 votes out of nearly 3 million cast. Some commentators attributed the defeat to prominent opposition by disability activists there who feared pressure to use the law, especially for older people with disabilities. Opposition also included the Massachusetts Medical Society and Senator Ted Kennedy’s widow.

INTERNATIONAL ACTIVITY

AUSTRIA

The Gallup Inc. poll for the Swiss Medical Lawyers Association (SMLA) found that Catholic Austria had the third highest support for the idea of allowing people to decide to take their own lives with 83 per cent in favour. An additional 4 per cent had no opinion and 13 per cent did not agree.

The country which showed the least enthusiasm still also had a majority in favour in Greece where just over half – 52 per cent – agreed assisted suicide should be allowed in some cases such as terminal illness. Support was only stronger in Germany and Spain.

In addition 72 per cent of people in Austria agreed that they could consider using assisted suicide themselves with 18 per cent against the idea, and of these 85 per cent said it should always be carried out with professional assistance in the form of a medically qualified person.

Most Austrians also felt it was wrong that doctors could face prosecution for helping with assisted suicide with 77 per cent calling for it to be lifted against 14 per cent that felt it was right to keep the law in place and 9 per cent that did not know.

Some 27 per cent of Austrians however also admitted that they were worried that they might be put under pressure to choose suicide if it was legalised, saying they saw it as an occasional risk and 7 per cent said they imagined it would be a frequent risk.

AUSTRALIA

Every week about five elderly Australians commit suicide, and euthanasia advocates say most of them hang themselves for lack of a better way to end their pain.

At the same time, keeping people alive with “futile” but expensive treatments in hospitals is both cruel and blowing out health budgets, an intensive care doctor says. “The vast majority is by hanging themselves. The explanation for that is that rope is very easy to get and access to information about how to hang yourself is easy to get … but information about a safe peaceful mediated death is not.

CANADA

Exposing Vulnerable People to Euthanasia and Assisted Suicide by Alex Schadenberg uncovers data from peer reviewed journal articles and studies related to the euthanasia deaths without request, the unreported euthanasia deaths, and the experience of nurses with euthanasia in Belgium. The book also examines the most recent statistics from the Netherlands.

This book exposes how vulnerable patient groups are dying by euthanasia and it also exposes how Justice Smith in the Carter case, the Royal Society of Canada end of life decision making report and the Quebec Commission on Dying with Dignity avoided the truth in order to establish false and dangerous recommendations for the legalization of euthanasia and assisted suicide. “Using already existing studies, Schadenberg has uncovered the shocking truth about euthanasia in Belgium, the lives lost and the deep threat to others. His work demonstrates unequivocally that we must never follow this Belgian pathway to the easy killing of people whose lives are not valued by those who do the killing.”

SOUTH AFRICA

Davison, author of Before We Say Goodbye: Helping my mother die and After We Said Goodbye, was sentenced to five months of house arrest in New Zealand for assisting in the suicide of his terminally ill mother. He returned to South Africa at the end of April. Davison is on the executive committee of DignitySA and they have drafted a policy document that could be used as the basis for a draft bill. The organisation is considering bringing a class action to the Constitutional Court if the bill is not adopted by parliament. They are aiming to legalise euthanasia by the end of next year.

UNITED KINGDOM

An independent review of the controversial palliative care practice known as the Liverpool Care Pathway (LCP) has been announced, many newspapers report.

The LCP is intended to allow people with a terminal illness to die with dignity. But there have been a number of high-profile allegations that people have been placed on the LCP without consent or their friend’s or family’s knowledge.

Concerns have also been raised about hospitals receiving payments for increasing the number of patients who are placed on the LCP.

Care minister Norman Lamb is quoted as saying ‘It is clear that everyone wants their loved ones’ final hours of life to be as pain free and dignified as possible, and the Liverpool Care Pathway is an important part of achieving this aim.’

‘However, as we have seen, there have been too many cases where patients were put on the pathway without a proper explanation or their families being involved. This is simply unacceptable.’

*

Does the cost of applying heroic measures at the end of life exceed the cost of palliative care for 6 months? Can’t be about saving money. In America, nothing happens without a cost-benefit analysis. But the case for a less excruciating death can stand on a more neutral, less disturbing foundation, namely that it is simply a kinder way of death.

*

A Church of England body is opposing changes to a British law on assisted dying, saying it would permit people to actively participate in someone’s death, a move unprecedented since the country’s abolition of capital punishment.

 

NATIONAL/INTERNATIONAL ORGANIZATIONS

Care Not Killing (UK)

Committee Against Physician-Assisted Suicide (US)

Compassion & Choices (US)

Compassion in Dying (UK)

Death with Dignity (US)

Dignitas (Switzerland)

Dignity in Dying (UK)

Dying with Dignity (Canada)

Euthanasia Prevention Coalition (Canada)

Final Exit Network (US)

Healthcare Professionals for Assisted Dying (UK)

Not Dead Yet (US)

Patient Rights Council (US)

Second Thoughts (US)

World Federation of Right to Die Societies (UK) – The World Federation, founded in 1980, consists of 45 right to die organizations from 25 countries. The Federation provides an international link for organizations working to secure or protect the rights of individuals to self-determination at the end of their lives.

BOOKS

How to Die Consciously by Diane Goble – Practical suggestions about how to prepare yourself and your family for your transition whenever/however it happens (because we are all going to die)

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One comment on “Wrapping up the Massachusetts Death With Dignity Defeat

  1. Pingback: Wrapping up the Massachusetts Death With Dignity Defeat | Diane ... | Human services collaborations | Scoop.it

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