Considering the value of life... medical ethical issues at the beginning, middle and end of life

This summer, the public learned of a 64-year old woman, living in a low-income apartment and covered by Medicaid under the Oregon Health Plan, who was denied coverage for chemotherapy prescribed by her oncologist for her lung cancer, but she was offered state-assisted suicide as a “palliative or comfort care measure.”

“Treatment of advanced cancer that is meant to prolong life, or change the course of this disease, is not a covered benefit of the Oregon Health Plan,” read the letter from the state’s healthplan notifying her of its decision. Dr. Walter Shaffer, medical director of the state Division of Medical Assistance Programs, which administers the Oregon Health Plan, defended the decision, saying: “We can't cover everything for everyone. We try to come up with polices that provide the most good for the most people.” As the Register-Guard reported, when the Oregon Health Plan was established in 1994, it was expressly intended to ration health care and a prioritization list was drawn up, with diagnoses and ailments deemed most important placed at the top of the list.

In response to public reactions to this story, Oregon Health Plan told the Oregonian last week that her second chemotherapy had been denied because of the drug’s very high cost and what they felt were limited benefits. “The money Oregon can spend on health care is limited... The reality is that if we pay for marginally effective, expensive, second-line treatments for one person, we would be denying access to well-established, first-line treatments for others.”

Local oncologists, however, reported that they’ve seen a significant change in how cancer is managed in the state and that their Oregon Health Plan patients can no longer get coverage for chemotherapy if it’s considered comfort care. “It doesn’t adhere to the standards of care set out in the oncology community,” said Dr. John Caton, an oncologist at Willamette Valley Cancer Center. [Despite the popularity of demonizing pharmaceutical companies, note that the manufacturer of the $4,000 a month chemotherapy drug stepped forward and offered it to her for free.]

The rationing of care that inevitably follows when a third party controls the purse strings forces us to confront the rawest of medical ethical decisions. This story wasn’t about a person deciding to end her life and seeking physician-assisted suicide, this is about a state government agency informing someone who wants treatment that her only option is to kill herself. Colorado Right equated it to the state “getting rid of those it finds useless.” However, even while such patients may not seek physician-assisted suicide, do they die sooner as a result of being denied additional treatment?

An Australian columnist argued that life and death should be private, not something decided by the government or legislature. Sandra Lee wrote that this issue is “one of the great moral mazes of our times,” as the ageing population is increasingly seen as a burden to the public purse:

To my mind, though, there is no burden. We should care for our aged regardless of the ailments and cost. We should respect their wisdom and experience in all its forms. Sadly and sickeningly, we live in a society in which the elderly have somehow become disposable, or have been led to believe they have a use-by date.

Consider when cost containment and rationing of care denies even palliative measures that could relieve the suffering of people with serious or terminal illnesses and when people are left with few options and are desperately suffering: When they’re offered a way to hasten their death and end their misery, are they really in a position to freely make that decision to end their life or has a medical professional’s oath to care for their patients crossed the line into duress to end their lives?

Hospice in the United States

In the U.S., when doctors believe a patient has less than six months to live if their disease follows its usual course, the patient is eligible for hospice care under Medicare Hospice Benefits, where he/she signs away their Medicare Part A medical care and receives all of their care through the Medicare hospice agency. Hospice care, usually delivered in the home by caring professionals who are expert at easing the burdens for terminal patients, can be a godsend for patients and their families. However, care through hospice can only be palliative and not in any way curative or treat their disease in a way that might extend their life or shorten it.

But some palliative treatments that could provide relief from devastating symptoms and improve the quality of life for terminal patients are also denied under hospice if they cost too much. Some cancer patients, for example, may have metastasized tumors causing arduous symptoms that palliative radiation might ease — treatment that won’t affect the primary cancer that will actually kill them — but to receive that palliative treatment, they can be forced to delay hospice and its needed help, because the hospice agency doesn’t want to pay for it. Only those with insurance or the means to pay have such options for other treatments, meaning the poorest terminal patients can be moved to hospice sooner.

Last fall, Kevin Sack at the New York Times reported on the ethical-financial dilemmas of hospices caring for the terminally ill, and the barriers to quality of care for people needing hospice. Over the past eight years, hospices have been hit with enormous assessments from the federal government when they’ve exceeded their reimbursement limits... because patients don’t always die according to actuarial schedules. As he explained, in the early days of Medicare hospice benefit, designed for people with less than six months to live, most all of the patients were cancer patients who usually died quickly and predictably once their treatments were withheld. But recently, hospice has also included people with Alzheimer’s disease whose average stays are considerably longer — nearly twice as long than those with lung cancer, for instance, according to the Medicare Payment Advisory Commission. But Medicare caps reimbursements under hospice to $135/day for each patient for whom the hospice agency is responsible for providing nurses, social workers, chaplains, doctors, drugs, supplies and equipment and bereavement support for the family of a terminally ill patient.

“In 1998, Congress removed limits on the number of days that an individual could receive Medicare hospice coverage, a move that encouraged physicians to refer terminal patients,” he explained. “But lawmakers did not remove a cap on the aggregate amount that hospice providers could be reimbursed each year, a measure designed to contain the program’s cost.” A hospice’s total annual reimbursement cannot exceed $21,410 for each patient per year. So, to stay solvent, some hospices are forced to look to enroll people closest to death with shorter predictive stays and they are more likely to delay enrolling patients with costlier care.

“A number of hospice providers said ethical and legal constraints would prevent them from discharging patients who outlived their profit potential. But some said they sometimes delayed admission for those patients with illnesses that might result in longer stays,” Sack reported.

Government-mandated education on ending life

But medical professionals can also face other ethical conflicts when preserving life and relieving suffering. Is it morally ethical at the very moment when a patient is at their most vulnerable —in pain, impaired or emotionally devastated by just learning news of a terminal diagnosis — to suggest death as an answer?

Last week, legislation passed the Assembly in California and awaiting Governor Schwarzenegger’s signature to become law doesn’t just legalize physician-assisted suicide, many believe it encourages terminal patients towards suicide. AB 2747 mandates that medical professionals give any patient newly diagnosed with a terminal illness or with a prognosis of one year to live, information normally reserved for those whose death is imminent. Doctors would be legally required to talk with patients still a year or more from death, about unusual end-of-life ways to end their lives more swiftly, under “palliative measures,” including terminal sedation and voluntarily starving and dehydrating themselves.

Brian Johnston, an expert on euthanasia and bioethics and executive director of the California Pro-Life Council, explained that the bill was sponsored by 'Compassion in Choices' the new name for the Hemlock Society, “the country’s leading right to die organization.”

Much of what this bill mandates will actually be carried out in the thousands of 'long-term care homes' and various other "health care facilities" that do not have on-site physicians. (Section 442.5) In this case the medical director of the facility is ordered to call in "community-based organizations that specialize in end-of-life care case management"... to fulfill the law. Note that the mysterious organizations described do not provide health care, but "end of life case management."

Directing medical directors of healthcare facilities to refer patients to agencies that specialize in end-of-life consultation are euphemisms for advocates of assisted suicide and euthanasia like Compassion and Choices and the Final Exit Network, say opponents. According to the Catholics for Common Good Action organization, this bill is dangerous because it creates a conflict of interest for facilities trying to save costs due to capitated reimbursement. It will also needlessly traumatize patients and remove a doctor’s discretion as to the appropriate type and timing of information that a patient and family desires and is relevant to them. It is unconscionable that such information on ending life faster would also be legally mandated for terminally ill children.

This legislation is opposed by a broad group of religious organizations, disability and civil rights groups and oncology doctors experienced with end-of-life care, such as the Association of Northern California Oncologists. Stanton J. Price, a member of the Los Angeles County Medical Associations Biomedical Ethics Committee and a medical lawyer, raised concerns about the ethics and legalities of this bill, calling it dangerous and unnecessary. “Patients are already legally entitled to whatever information they request from their physicians,” he wrote in the LA Times.” And when it comes to treatment, they are entitled not only to all information about the treatment but all information about treatment alternatives, including information about the alternative of doing nothing.”

The bill also puts large numbers of vulnerable patients at risk of being coerced into ending their life and frightened by extremely inappropriate information. As Randy Thomasson, president of Campaign for Children and Families, said, some people told they have a year to live, “then go on to live healthily for twelve.”

The bill also places medical professionals in the position of legally having to act in ways that may not be in the best interests of their individual patients. As Price added:

The bill refers to "terminally ill" patients and "terminal illness," and requires a physician to provide information about palliative care to patients in those categories. "Terminal illness," though, is a term that is vague to the point of being meaningless. Breast cancer, prostate cancer, diabetes and many other conditions are terminal unless treated. But with proper treatment, they may not be terminal at all. Requiring an oncologist to tell a woman who has just been diagnosed with breast cancer all about end-of-life palliative care would only frighten and be extremely inappropriate.

"Palliative care" is much too broad a term to be used in legislation. Contrary to what The Times says, it can well encompass assisted suicide.

A different meaning of “palliative” care

As similar distortion of the meaning of palliative care was also seen in a very troubling editorial that appeared in the August issue of the American Journal of Nursing, suggesting that nurses can and should help terminally ill patients hasten their dying. It was authored by Judith Schwarz, Ph.D., RN, who is the clinical coordinator for the northeast branch of the assisted suicide advocacy group, the Hemlock Society, now calling itself Compassion & Choices in the Northeast. She is also the contributing editor for ethical issues for the American Journal of Nursing. Her editorial was republished online by the Nursing Center. She says that from her years of experience with this end-of-life advocacy organization, she knows:

Many hospice nurses are reluctant to answer patients' questions about legal options for hastening dying. For example, while most hospice nurses will support a patient's informed decision to stop eating and drinking, many won't volunteer such information to a patient who asks and who may not know of the option.

I suspect that many nurses fear unduly influencing vulnerable patients or removing their "hope." But while nurses should always explore the meaning behind a patient's request for information about hastening dying, they must also listen, respectfully and without judgment, to patients' concerns about their dying....[Some patients] have said that when they ask what they can do "to end this," some hospice nurses mechanically repeat the hospice movement's credo, "We neither hasten nor prolong dying." Such patients quickly learn what not to say.

In 1994 the American Nurses Association (ANA) confirmed that nurses shouldn't "[make] the means of suicide ([such as] providing pills or a weapon) available to a patient with knowledge of the patient's intention." But the ANA did not include taking appropriate palliative measures in its definition of assisted suicide.

Nurses who care for terminally ill patients must be encouraged to inform patients who ask about all legally and ethically sound palliative options, including those that might hasten dying: forgoing life-prolonging interventions, refusing food and fluids, and receiving high doses of opioids or palliative sedation that causes unconsciousness... Nurses who provide information on or support such choices aren't assisting in suicide.

But nurses still must intervene to prevent irrational suicidal acts made by patients suffering from mental illness (particularly depression) or impulsive acts of self-destructive behavior that may be driven by despair, guilt, or hopelessness. Patients suffering from acute or chronic mental illness that interferes with their ability to make informed decisions and who aren't terminally ill but want to die are not the same as competent patients suffering from a terminal illness who seek to hasten dying. Both groups of patients are suffering and need help: different kinds of help.

Often, good palliative or hospice care alleviates the suffering of the dying. Nonetheless, a small but significant proportion of dying patients suffer intolerably. Although most don't seek a hastened death, some will ask about it. And when they do, nurses experience a great moral conflict: they want to help their patients die well, yet they don't want responsibility for helping them to die. Patients who are dying have no control over the inevitability of their death. When they suffer intractable symptoms, they should receive complete end-of-life support from nurses. It's the least we can provide.

The reaction of Wesley J. Smith, J.D., with the Euthanasia Task Force, and Center for Bioethics and Culture, was: “Absolutely not!” It is not the role of a nurse to diagnose a patient’s mental illness or ever lead a patient towards decisions to end their life. And when a patient asks for a hastened death, a hospice nurse refers to the multidisciplinary team. Discussing assisted suicide is the role of the patient with his/her doctor. As Mr. Smith wrote:

Patients can develop very intense emotional connections to their nurses. Realizing that, it is up to nurses to compassionately care for their patients but beware unduly influencing them. More to the point, it is not their job to diagnose physical or mental health issues or to intervene with the patient and help (persuade) them to pursue certain medical options.

Of course, patients are entitled to refuse life-sustaining treatment and end heroic measures to prolong their lives, and sometimes ‘palliative sedation’ may be appropriate and compassionate, he said, when a patient has voluntarily chosen and requested that intervention. But it is not the role of the nurse to assist patients in ending their life, as the ANA position clearly means. When patients ask if they can abstain from further heroic measures to save their lives and want to know what will happen, they don’t necessarily want to know how to kill themselves, as would be mandatorily lumped in with information on 'palliative support'.

Ms Schwarz, like this California legislation, alters the definition of ‘palliative measures’ to mean something different from 'comfort measures' that medical professionals have traditionally considered it to mean. As the World Health Organization defines palliative care, it is care that improves and enhances the quality of life of patients and their families, through relief of suffering, treatment of pain and other distressing symptoms, and by offering physical, psychological and spiritual support. Specifically, it “intends neither to hasten or postpone death” — the opposite of actively suggesting or guiding patients towards seeking to hasten their own death. According to WHO, palliative care:

● provides relief from pain and other distressing symptoms

● affirms life and regards dying as a normal process

● intends neither to hasten or postpone death

● integrates the psychological and spiritual aspects of patient care;

● offers a support system to help patients live as actively as possible until death

● offers a support system to help the family cope during the patients illness and in their own bereavement

● uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated

● will enhance quality of life, and may also positively influence the course of illness

● is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

Screening out undesirable characteristics

But medical professionals today also risk being placed into positions that may cross their personal ethics in other ways where eugenics is creeping into medicine.

The leader of the primary opposition party in Britain told the press that he supports allowing children to be aborted up to the point of birth if there was indication they might be disabled. The Abortion Act there had been amended in 1990 to allow this and since then, Britain has one of the highest abortion rates in the western world, with some abortions being approved for cosmetic and easily correctable problems such as cleft palate and webbed fingers. This is not about eliminating women's choice, but fiercely demands we consider carefully what the controversy reveals about us and how we view and value life and protect and care for those seen as burdens or lesser somehow.

Women are even increasingly being cruelly condemned and blamed for giving birth to a special needs baby, with a staggering 92% of Downs syndrome pregnancies terminated today, leading ethicists to make cautionary comparisons to eugenics and efforts to eradicate the most vulnerable, imperfect, cosmetically undesirable, or most costly members of society.

“Where do you draw the line?” says Dr. Benjamin Krantz, a visiting lecturer of bioethics at Johns Hopkins School of Medicine in Baltimore, who sees some value in the prenatal testing that determines if a fetus is carrying Down syndrome’s trademark 21st chromosome. But: “At what point are we engaging in eugenics and not accepting the normal diversity within a population?”

The burgeoning field of reprogenetics — genetic screening of embryos for in-vitro fertilization to eradicate genes associated with certain conditions — remains largely unregulated but screening for serious medical disorders is commonplace in the United States and Britain, according to Ronald M. Green, professor of ethics at Dartmouth College. He wrote of a recent approval given by the Human Fertilization and Embryology Authority to allow embryos to be discarded that tested positive for cancers, citing concerns that an embryo carrying a cancer mutation could go on to live for 40 or 50 years before ever developing cancer, and there was a chance cancer might never develop. To some, this move “crossed a bright line separating legitimate medical genetics from the quest for ‘the perfect baby,’” he said.

The fervor to understand the genetic bases of human traits and diseases has grown exponentially with the completion of the Human Genome Project in 2003. This includes the rush to develop tests to pinpoint the DNA sequences or combinations associated with certain characteristics, which some believe are only four or five years away, said professor Green.

But, as medical experts, bioethicists and scientists have pointed out [and covered here extensively], genetic testing is not only inadequately regulated, but the accuracy of the tests and what the test results mean isn’t known, according to Marcy Darnovsky, associate executive director of the Oakland-based Center for Genetics and Society. And for physical traits, the evidence for genetic links is sketchy at best. Even when a correlation between a genetic variation and a disease, is strong, in most cases it doesn’t mean someone will get the disease, either. Yet, genetic tests being marketed to adults and prospective parents reinforce the exaggerated beliefs about the role of DNA in who we are as individuals, suggested Francis Collins, director of the National Human Genome Research Institute. And there’s a rush to market genetic tests to individuals, insurance companies, employers and others.

As professor Green notes:

If we understand the genetic causes of obesity, for example, we can intervene by means of embryo selection to produce a child with a reduced genetic likelihood of getting fat. Eventually, without discarding embryos at all, we could use gene-targeting techniques to tweak fetal DNA sequences. No child would have to face a lifetime of dieting or experience the health and cosmetic problems associated with obesity. The same is true for cognitive problems such as dyslexia.

This belief, while popular, illustrates the unfathomable potentials for abuses of genetic tests, seeking to identify those at risk for obesity or associated with any physical trait or health risk viewed as undesirable. By the 2004 update to the Human Obesity Gene Map, a project of Pennington Biomedical Research Center in Baton Rouge, Louisiana, more than 600 different genes, markers and chromosomal regions had been linked with human obesity phenotypes. But sorting those out to identify how they might combine to express themselves in individual obesity is unlikely to ever materialize. In the 2007 issue of Obesity, the director of the Human Genomics Laboratory at Pennington said the project was being discontinued and wrote that it was “time to move on.” The last rendition of the obesity gene map with the database of studies identifying “associations” with obesity took up 116 journal pages and simply couldn’t be sustained. A simple genetic test that claims to identify a genetic link to obesity in adults is not credible, nor is it likely to be used for anything but discriminatory measures.

Fears of Gattaca and creating a genetic “despised underclass” with its eugenics obsessions that all but extinguished human love and compassion “aren’t limited to science fiction,” professor Green said. “Over the past few years, many bioethicists have spoken out against genetic manipulations.... Will our ability to choose our children's biological inheritance lead parents to replace unconditional love with a consumerist mentality that seeks perfection?”

Many critics fear that reproductive genetics will widen our social divisions as the affluent "buy" more competitive abilities for their offspring, he said. “Will we re-create the horrors of eugenics that led, in Europe, Asia and the United States, to the sterilization of tens of thousands of people declared to be "unfit" and that paved the way for the Holocaust?”

© 2008 Sandy Szwarc