Terminally ill patient ends her life

Excerpted from “Brittany Maynard, right-to-die advocate, ends her life,” USA Today. November 3, 2014 — Brittany Maynard, the 29-year-old face of the controversial right-to-death movement, has died. She captivated millions via social media with her public decision to end her life.

Sean Crowley, spokesman for the non-profit organization Compassion & Choices, confirmed Maynard's death Sunday evening. "She died peacefully on Saturday, Nov. 1 in her Portland home, surrounded by family and friends," according to a statement from Compassion & Choices. The statement said Maynard suffered "increasingly frequent and longer seizures, severe head and neck pain, and stroke-like symptoms." She chose to take the "aid-in-dying medication she received months ago."

Her death brings a new element to the movement in the age of social media because the conversation has included younger people. "She's changed the debate by changing the audience of the debate," Abraham Schwab, an associate professor of philosophy at Indiana University-Purdue University Fort Wayne, told the Associated Press earlier.

Maynard was diagnosed with a stage 4 malignant brain tumor. She moved with her family from California to Oregon, where she could legally die with medication prescribed under the Oregon Death With Dignity Act.

"I understand she may be in great pain, and her treatment options are limited and have their own devastating side effects, but I believe Brittany is missing a critical factor in her formula for death: God," said Joni Eareckson Tada last month in an article for Religion News Service.

Commentary

CMDA CEO David Stevens, MD, MA (Ethics): “I’m deeply saddened by Brittany Maynard’s suicide. As far as we know, she had no hope—despite Joni Erickson Tada, Kara Tippets (who is dying with Stage 4 breast cancer) and others pointing her toward God, our real source of hope. I’m saddened because Compassion and Choices used and possibly abused her as their ‘poster child’ for legalizing physician-assisted suicide in a slick media campaign that drew millions of Facebook and YouTube hits, as well as enormous favorable media attention. I can’t help but wonder why she announced she was going to postpone her suicide, only to take her life two days later? Did she feel pressured or obligated to do it?

“I’m even more saddened that many more patients are likely to die because Ms. Maynard glorified suicide as the answer to suffering, and it won’t just be highly controlling, terminally ill patients like her. In the short term, it will be vulnerable teens and the depressed. In the long run, it will be handicapped newborns, Alzheimer’s patients, the chronically sick and the mentally ill, as we have already seen in Europe. It’s inevitable, despite all the so-called safeguards. Who can deny ‘this right to death with dignity’ to anyone who is suffering or is even afraid they may suffer in the future? And if the patient is incompetent, should the physician, exhausted caregiver or the son or daughter set to inherit the estate decide ‘on their behalf?’ Ultimately, it will kill the ethos of healthcare as doctor-patient trust is destroyed.

“It is too late for Brittany, but not for you and me to speak the truth in love to alter the predictable future. I’m heading to New Jersey next week to meet with legislators to urge them to say ‘No’ on an expected physician-assisted suicide vote scheduled for Thursday, November 13. I’m then traveling from one end of Montana to the other, speaking out against physician-assisted suicide in every major city and doing media interviews along the way to hopefully halt their march off the physician-assisted suicide cliff.

“What are you going to do to alter the future—before it is too late?”

Resources

CDD STAT Interview with Kara Tippetts, a stage-four cancer patient
Euthanizing Medicine, a presentation on the implications of legalizing physician-assisted suicide
Top Reasons Why Physician-Assisted Suicide Should Not Be Legal

Action

Physician-assisted suicide legislation is now being attempted in California, Connecticut, Massachusetts, Nevada, New Jersey, New Mexico and Pennsylvania. If you’d like to get involved in the fight against this dangerous legislation, please contact communications@cmda.org.

Understanding palliative care

Excerpted from "Teaching doctors when to stop treatment," commentary by Diane E. Meier and Health Affairs in The Washington Post. May 19, 2014 — For years I had tried to understand why so many of my colleagues persisted in ordering tests, procedures and treatments that seemed to provide no benefit to patients and even risked harming them. I didn’t buy the popular and cynical explanation: Physicians do this for the money. It fails to acknowledge the care and commitment that these same physicians demonstrate toward their patients.

Patients and families often assume their doctors are trained and knowledgeable about end of life. Patients and families also assume that doctors will tell them when time is running out, what to expect and how best to navigate these unknown and frightening waters. But many doctors don’t do these things. Most, in fact, have no training in this. Medical school and residency have traditionally provided little or no instruction on how to continue to care for patients when treatments no longer work.

Physicians are trained to make diagnoses and to treat disease. Untrained in skills such as pain and symptom management, communication about what to expect in the future and achievable goals for care, physicians do what we have been trained to do: Order more tests, more procedures, more treatments, even when these things no longer help. Even when they no longer make sense.

So how do we fix this? To change behavior, we must change the education and training of young physicians and the professional and clinical culture in which they practice. New doctors should learn about the management of symptoms such as pain, shortness of breath, fatigue and depression, with intensive training on doctor-patient communication: how to relay bad news, how to stand with patients and their families until death and how to help patients and families make the best use of their remaining time together.

Commentary

CMDA Past President and Oncologist Al Weir, MD: “The author describes an unusual case history to suggest two important questions: As doctors, do we know how to resist making life longer when it’s no longer likely and instead focus profoundly on making life the best it can be? Do we know how to ask others to help us in this task?

“Sometimes we, and our patients, may cling to hopes that are no longer realistic. Instead, we should be open and honest and help our patients navigate their way through a new truth of life. Such a shift in effort does not come naturally for most of us; time, skills and compassion are required. Palliative care teams are often the best way to supplement the capabilities and time we may be lacking.

“Even experienced doctors should seek to sharpen their skills and become mentors for our next generation, so that these younger doctors may be more adept at compassionate end of life care than we have been.

“Today was an unusual day for me in which I had the privilege of sharing bad news and redirecting life goals with three patients, while a medical student leaned silently against the exam room wall. After the last such conversation I probably surprised him by saying, “You know, though the circumstances are horrible, I actually like having these conversations. In such moments, I can be the one who shares this awful truth with kindness and love. I trust myself to do this better than others, because I really care for them. I did the work to help them live longer. Now things have changed and I can do the work to help them live better.”

Resources
End of Life Care Resources
Medical Futility Ethics Statement
When Your Doctor Has Bad News by Al Weir, MD

Are you interested in learning more about bioethics? Join us in Deerfield, Illinois on June 19-21, 2014 at The Center for Bioethics & Human Dignity’s 21st Annual Summer Conference – Bioethics in Transition. With a variety of workshops and courses, you will examine the rapid advances in medicine, science and technology that continue to reshape the scope and landscape of bioethics.

Assisted suicide advocates make their case in JAMA

Editor's note: Under JAMA's Conflict of Interest Disclosures, each of the authors of this excerpted article "report consulting for Compassion and Choices," an assisted suicide advocacy organization formerly known as the Hemlock Society.

Excerpted from "The Changing Legal Climate for Physician Aid in Dying," JAMA, April 14, 2014 - Voters in Oregon and Washington have legalized aid in dying by public referendum, legislators in Vermont have done so by statutory enactment, and courts in Montana and New Mexico have done so by judicial rulings. Support for aid in dying is increasing, and it would not be surprising to see voters, legislators, or courts in other states approve the practice.

At one time, it was not clear whether patients could hasten death by refusing life-sustaining medical treatment. Recognition of the right to refuse life-sustaining care reflected a societal consensus that people should be able to decline treatment when they are suffering greatly from irreversible and severe illness. Although a right to refuse treatment did not go too far in allowing death-causing actions, many people felt it did not go far enough. For instance, some patients are seriously ill and suffering greatly from widely metastatic cancer or other advanced diseases, but are not dependent on life-sustaining treatment. For those patients, aid in dying can be an important option.

However, there are real risks if patients are allowed to receive a prescription for a lethal dose of medication. Not all patients who would ask for a prescription would be suffering from an irreversible and severe illness. Some might have become tired of life, depressed, or feel that that their life has insufficient meaning. Accordingly, a right to aid in dying could be recognized only with assurances that access would be limited to patients who are truly seriously ill. In addition, as with the withdrawal of treatment, the government could not impose limits by making quality-of-life judgments.

The terminal illness requirement provides the right kind of limit for aid in dying. It does not empower the government to make quality-of-life judgments, and it restricts the practice to patients who are suffering from irreversible and severe disease.

This is not just a matter of theory. Oregon has had more than 15 years of experience with aid in dying limited to the terminally ill, and the state’s experience has been reassuring. Vulnerable patients are not succumbing to aid in dying. It is not surprising that once Oregon’s experience with aid in dying was reassuring, other states were willing to consider authorizing aid in dying.

By restricting aid in dying to competent and terminally ill adults, the law can ease the dying process for patients, and their families, and avoid the potential for the mistreatment of patients.

Commentary

CMA VP for Government Relations Jonathan Imbody – “These assisted suicide advocates cleverly employ several techniques to break down barriers to their radical position, which is that we should obviate over two millennia of Hippocratic medicine and empower doctors to help their patients kill themselves.

• Employing euphemisms: The authors insist that the euphemistic term ‘aid in dying’ replace the clear and accurate term ‘assisted suicide.’ The group they support changed its name from the Hemlock Society to Compassion and Choices.
• Linking a radical idea to an accepted idea: We're supposed to think that just as our society once hesitated to allow patients to refuse life support but now accepts that notion, we likewise should see the light and embrace assisted suicide. As if there is no difference between letting someone die naturally and killing them with secobarbital.
• Stressing meaningless safeguards: The authors try to position themselves as the concerned, conservative protectors of patients and ethics, emphasizing that ‘a right to aid in dying could be recognized only with assurances that access would be limited to patients who are truly seriously ill.’ But since ‘the government could not impose limits by making quality-of-life judgments,’ who determines what ‘seriously ill’ means? You guessed it--physicians like the authors, whose bias toward assisted suicide will doubtless expand the definition beyond meaning.
• Citing misleading statistics: ‘Figures don't lie, but liars figure.’ Crafty assisted suicide advocates wrote into Oregon's assisted suicide measure the following secrecy clause: ‘...the information collected shall not be a public record and may not be made available for inspection by the public.’ That clause prohibits anyone-- relatives, media, watchdog groups, medical associations--from investigating the details of any of the reported assisted suicide cases. State bureaucrats, who, of course, maintain a vested interest in covering up any problems or abuses that might reflect negatively on the state, annually trot out their own bland, general statistics without detail or the possibility of review. Year after year, assisted suicide advocates point to these meaningless, whitewashed, non-verifiable numbers as proof that the system is working wonderfully.

“For secular audiences, some effective arguments against assisted suicide include:

• highlighting the lack of safeguards in most assisted suicide measures, including inadequate diagnosis and treatment of depression, the absence of requirements to notify family members and the dangers of storing lethal medications at home;
• explaining how assisted suicide perverts the safe nature of the patient-physician relationship, removing the vital assurance that the physician will always ‘do no harm;’ and
• emphasizing that healthcare payers including insurers, the government and even heirs have a tempting financial incentive that leans heavily toward your premature death.”

Resources

CMDA Resources on Assisted Suicide

Action

Write a response to JAMA

Advocate in your own specialty college for hospice and palliative care and against assisted suicide and euthanasia.

Brain-dead patient taken off life-support

Excerpted from “Brain-dead Texas woman taken off ventilator,” CNN Health. January 27, 2014 — A wrenching court fight—about who is alive, who is dead and how the presence of a fetus changes the equation—came to an end Sunday, January 26 when a brain-dead, pregnant Texas woman was taken off a ventilator. The devices that had kept Marlise Munoz's heart and lungs working for two months were switched off about 11:30 a.m. Sunday, her family's attorneys announced.

Munoz was 14 weeks pregnant with the couple's second child when her husband found her unconscious on their kitchen floor November 26. Though doctors had pronounced her brain dead and her family had said she did not want to have machines keep her body alive, officials at John Peter Smith Hospital in Fort Worth had said state law required them to maintain life-sustaining treatment for a pregnant patient.

Sunday's announcement came two days after a judge in Fort Worth ordered the hospital to remove any artificial means of life support from Munoz by 5 p.m. Monday. The hospital acknowledged Friday that Munoz, 33, had been brain dead since November 28 and that the fetus she carried was not viable. Her husband, Erick Munoz, had argued that sustaining her body artificially amounted to "the cruel and obscene mutilation of a deceased body" against her wishes and those of her family. Marlise Munoz didn't leave any written directives regarding end-of-life care, but her husband and other family members said she had told them she didn't want machines to keep her blood pumping.

Commentary

Since there are a variety of opinions on this difficult ethical issue, we have included 2 commentaries.

CMDA CEO David Stevens, MD, MA (Ethics):"While the medical technology being applied to Mrs. Munoz’s body might be considered “organ support” for her, it was “life support” for her unborn child. At the time of her death the baby was a few days from reaching 24-weeks gestation when survival rates approach 50%. Every day of continued life support improved the odds of the baby’s survival.

"A few days ago, on February 9th, Robyn Benson had a premature baby boy. Just after Christmas she suffered a cerebral hemorrhage resulting in her own brain death. She was maintained on life support until her baby was delivered. The ventilator was disconnected the day after her child was born. According to reports, the baby is doing well in the NICU.

"I don’t have access to the medical records in either of these cases, but a CNN article on the Benson case makes an inadequate effort to ethically differentiate between her baby’s situation and Mrs. Munoz’s. First, they let you know that one child was wanted by its father but the other was not. The worth of a human being does not depend on whether it is wanted or not. Secondly, the Munoz lawyer’s reported that an incomplete ultrasound had shown the baby had hydrocephalus and possibly other malformations. We should recognize that disposing of the disabled is unethical and simply eugenics. Who decides when a person is disabled enough for elimination?

"CMDA does not have an official ethics statement dealing with this complex issue. Maybe we should. You can contribute to the discussion of what it should say by clicking on the comment link below."

Clinical Ethicist and CMDA Trustee Robert D. Orr, MD, CM:“Marlise Munoz was dead, but her 14-week old fetus was alive. If Mom’s organs could be successfully perfused for another 12-14 weeks, her unborn baby could survive and be delivered by C-section. It is possible, though clinically very challenging. But should it be done?

“Marlise’s family did not want artificial support continued, and they were convinced she would not want it. The hospital believed Texas law prohibited removing life support from a pregnant woman. The legal issue was straightforward: Marlise was dead, therefore the support was not ‘life support’ for her, but ‘organ support’ for the benefit of the fetus. Continued support was legally optional.

“But what about the ethical dilemma? Who should decide? What factors should be considered? Some believe it is morally obligatory to do everything possible to prevent fetal death. Others believe that ‘doing everything’ is not always obligatory, making this comparable to high risk, high burden prenatal fetal surgery, i.e., optional, decided by her family based on their understanding of her wishes and values.

“Not all believers will agree. We will agree that we are stewards of our lives, our bodies and our resources. And we will likely agree it is immoral to intentionally end prenatal life for trivial reasons. The intention in continuation was to possibly benefit a second life. The intention in stopping was to discontinue ineffective and unwanted treatment. I personally believe continued support in this case was discretionary. And I believe we should not harshly judge the Munoz family’s decision.”

Resources

CMDA Ethics Statement on Vegetative State
Resources on End of Life Care