Physician Aid in Dying: Oncologists Grapple With New Law

Roxanne Nelson, BSN, RN

April 05, 2016

Oncologists attending a recent meeting, the Gastrointestinal Cancers Symposium, were asked to imagine the following scenario.

"Imagine your patient with pancreatic cancer, who may be someone in your community or someone you knew before she had cancer. She is in her 50s or 60s, and has always been healthy, gets the usual jaundice, gets a CT scan and it looks pretty bad.

She asks your advice, and maybe decides on chemotherapy. She gets through it but the next scan looks worse.

You talk again, and talk about clinical trials, other chemotherapy regimens, but she says no, that she's had enough of chemotherapy. And that sets the tone for a completely different conversation — should she consider hospice, palliative care? Essentially, what can be done at this point?

For some patients, there is now another option — physician aid in dying (PAD) — which refers to a practice in which a physician provides a competent, terminally ill patient with a prescription for a lethal dose of medication, which the patient intends to use to end his or her own life.

But is it ever ethically permissible for a physician to be involved in PAD, even if it is legal, the clinician describing the above scenario asked.

The question was especially pertinent to the meeting, as it was held in San Francisco, and the state has recently passed a law allowing PAD.

George Fisher, MD, PhD, who posed the above scenario and questions during a panel discussion on PAD, is the Colleen Haas Chair in the School of Medicine at Stanford University in California.

But the debate extends far beyond California. As the fifth and most populous state to legalize this controversial practice, the move has dramatically altered the prevailing paradigm, observers said when the law was passed.

With 39 million people living in California, more than 14% of the population of the United States suddenly were given access to this option.

Not surprisingly, there was a great deal of debate over the bill, as well as impassioned opposition from different groups, Dr Fisher commented.

However, times have also changed.

"When it last came up 8 or 9 years ago, the California Medical Association voted no on it," Dr Fisher said. "But more recently, they have taken a neutral position, and neutral is okay."

"But what was absent from the discussion was the voice of the oncologist," Dr Fisher pointed out. "Oncologists, perhaps more than anyone else, should have a voice in this on behalf of their patients."

It was for this reason that Dr Fisher believed it was important to have a point/counterpoint on this topic.

He emphasized that this wasn't a pro/con discussion per se, but an opportunity to share perspectives.

"This is input from someone who lives in a state where physician aid in dying has been active, and from someone else who has questions about it," Dr Fisher said.

View From the Trenches

For Lynne P. Taylor, MD, a neuro-oncologist at Virginia Mason Medical Center in Seattle, the concept of a patient asking for assistance in dying has been a reality for a number of years. The Death with Dignity Act was voted into law in Washington state in November 2008, forcing oncologists and other physicians to deal with the issue head on.

"My conclusions are that physician aid in dying is morally and ethically permissible in only very rare circumstances, when all other means to end a patient's suffering have been exhausted and only in the context of a long-term physician–patient relationship," she said.

"As a neuro-oncologist practicing in Washington State, I have encountered patients who have requested death with dignity — the right to autonomy in determining the time of death, freedom from pain, and the release from a life of limited choices because of disability or fatigue," Dr Taylor told the audience.

She noted that these initiatives do raise a tough question for all caregivers: "Is physician aid in dying a legitimate part of palliative care or a failure to provide adequate palliative care?"

It is easy to oppose the concept of PAD when it is abstract, she pointed out, but can be harder to reject when faced with the individual issues of a particular patient.

The passage of the California law has opened the door to access for a substantial portion of the population, and bills on aid in dying have been introduced in a number of other states.

 
Even if you don't live in a state where it is legal, you may well have to grapple with it soon.
 

"For those who haven't thought about this, or even if you don't live in a state where it is legal, you may well have to grapple with it soon," Dr Taylor said.

She noted that physician-assisted dying, in various forms, is legal in a growing number of countries. Thus, physicians overseas "have also had to struggle to find out how personal, professional, and religious beliefs inform our interactions with our patients as we struggle to find our way with this topic."

A number of arguments to support PAD have been presented by proponents. One is that it is a very last-resort intervention to address severe and intractable suffering that cannot be addressed in any other way.

Second, because it is "our medical role to end unbearable suffering," and if there is no other way that is acceptable to the patient, "we need to ask ourselves if this is an appropriate role for the physician," she said.

Another is the right to patient autonomy and self-determination.

"There are also those who question if there is a true moral distinction between refraining from life-support measures and sedating patients at the end of life, such as giving morphine or giving the patient medication that they can self-administer to end their life," Dr Taylor continued.

Finally, as many of these practices are already occurring in a covert manner, proponents believe that it would be better to guide and monitor physician practices than to forbid them.

To give perspective and background on the issue, Dr Taylor explained that physician assistance in ending life is part of the trend toward greater patient autonomy in making decisions about their care. Since the mid-twentieth century, the right to consent to and refuse medical care has become increasingly prominent.

In 1976, the landmark "right to die" case of Karen Ann Quinlan made it permissible for a guardian to request that the physician disconnect a patient from life support to allow death, she explained.

"And after Quinlan, the debate shifted to IV lines, PEG tubes, and TPN," Dr Taylor said.

From 1976 to 1990, passive euthanasia, or allowing someone to die, became more acceptable, and in 1996, there were two more landmark cases — heard in the Ninth and Second Circuit Courts — that found a constitutional prohibition against laws that make physician-assisted suicide a crime.

The experience in Washington State has shown that despite the controversy and fears of possible misuse, very few patients actually opt to end their lives. From 2009 to 2014, even though the number of participants has been rising, the number is still very small, Dr Taylor said.

A total of 176 patients were prescribed lethal doses of medication in Washington State in 2014, of whom 76% had terminal cancer. Of this group, 126 patients died after ingesting the medication, indicating that about 15% who had requested the lethal medication did not pursue this course of action.

"In a state of 7 million people," she said, "[126 patients] is a very small number."

These results were somewhat similar to a study conducted by the Seattle Cancer Care Alliance in 2013, which reported on experience with the new law from 2009 to 2011. In that time period, 114 patients inquired about the program, but more than a third (38.6%) did not pursue it further.

During the study period, 30 patients (26.3%) initiated the process but elected not to pursue the option or died before completing the process.

Statistics show that the reasons that patients participate in the Death with Dignity Act are surprisingly consistent over time. "The vast majority do so because they fear losing their autonomy and being less able to engage in activities that make life enjoyable, while others fear loss of dignity," Dr Taylor said.

"Others feared becoming a burden on family and caregivers, losing control of bodily function, inadequate pain control, and a much smaller number have cited financial considerations," she noted. "These numbers were relatively the same in 2013 and 2014."

But there are numerous issues and factors to consider, which add considerably to the overall complexity.

One concern is that these patients may not be getting the care they need, which in turn has motivated them to end their life sooner rather than later.

"You could say that for those who cited inadequate pain control, better palliative care might help them change their mind," said Dr Taylor. "But to address that, many patients say that more pain control would make them less engaged and decrease their ability to enjoy life, so it doesn't change their mind."

Another is accurately gauging a patient's prognosis. The Washington law requires that a patient must be terminally ill with less than 6 months to live, and that this be verified by two physicians.

The "devil is in the details," said Dr Taylor, "but the definition of terminal illness and prognostication is a delicate art, and not very scientific."

In other words, physicians can be wrong.

"This is something I have a little trouble with even living in a legal state," she said. "All of us who have encouraged patients to enter a hospice have determined that they have 6 months or less. There is no downside to that, but sometimes we are wrong. I've had a patients in hospice for 2 years."

But if patients are determined to be terminally ill with less than 6 months to live and avail themselves of this option, "it becomes a self-fulfilling prophecy, so that is something to consider," Dr Taylor emphasized.

Finally, patients often do not understand what this procedure actually entails. "Many think that they will take a single pill and it will be easy," she said.

In reality, a patient must take 100 capsules of 100 mg secobarbital tablets, open them, and stir the powder into water to create a bitter drink or mix it into pudding or applesauce to hide the taste.

It must then be ingested quickly, which is no "small feat for a terminally ill patient," Dr Taylor said.

Another consideration is cost, as the medication is not covered by insurance. It can run about $4000 to $50,000 in the United States, although in Europe it would be more like $400.

But whether or not PAD is an option, providers can better prepare for these end-of-life care decisions by seeking out more advanced training and education in palliative care management, Dr Taylor said.

Stepping Into the Unknown

Kavitha Ramchandran, MD, a clinician in thoracic oncology and palliative medicine at the Stanford Cancer Institute in California, presented the viewpoint of a physician who is now being faced with the prospect of having a patient ask for assistance in dying.

 
I better become an expert because this is an issue that is facing our patients.
 

"This is now the law in the state I live and practice in," she told meeting attendees. "When asked to speak in this symposium, I hesitated because I'm not an expert in this subject. But then I thought, well, I better become an expert because this is an issue that is facing our patients. And if we're not experts, then who are they going to turn to?"

"As a physician, I don't know if I can take life," she said, noting that she has previously been asked about assisted dying by terminally ill patients.

"I have been happy to be able to say that I can't do that, but I will support and help you," she said.

But with the passage of legislation, she pointed out, everything has changed. If a patient meets the criteria, it is a potential option for them.

"If we do conscientiously object and we've know this patient for 20 years and say no, does that break that trust?" Dr Ramchandran asked. "How does it affect the relationship? These are not easy questions."

She noted that this is now really a starting place for physicians to face their own beliefs and ideas, and to confront them.

She acknowledged that she had many preconceived notions about assisting dying, and it was important to dispel myths from truth. "There are a lot of myths associated with this, but what is myth and what is truth? And then we have to try to understand where we sit and use the data in our decision making process."

One potential issue is that vulnerable populations, including women, the elderly, the uninsured, and AIDS patients, could unwittingly become the primary recipients of PAD.

"This has been an area of deep controversy since PAD became part of the legal and ethical landscape," said Dr Ramchandran. "It was thought that there would be social inequality in end-of-life decisions, and it was thought that the vulnerable populations would most likely to be affected."

However, a 2007 study that looked at data from the Netherlands and Oregon did not find this to be the case (J Med Ethics. 2007;33:591-597). The researchers found that there was no evidence of heightened risk for the elderly, women, the uninsured (inapplicable in the Netherlands, where all are insured), people of low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses (including depression), or racial or ethnic minorities.

The only group with a heightened risk was AIDS patients. "But this was in a time before the protease inhibitors really had made an impact, so it was a very different and social political climate," she explained.

Dr Ramchandran pointed out that the latest data from Oregon, in fact, showed that patients seeking PAD were well educated (almost half had a college degree or higher), were likely to be white, were young (only 22% were 75 years or older), and were almost evenly divided between men and women.

"It is probably a myth, based on a relatively homogenous population from Oregon, that vulnerable populations are at risk," she noted.

But this leads into another issue, that of the slippery slope. "Right now, the criteria for patient selection are very strict, but after a while, will they stay that way?" she questioned.

Again, that hasn't been seen in Oregon, where the law has been in place since 1997 — so the oldest in the United States. "Procedures have generally been strictly enforced, and in 2014, there were no referrals made to the Oregon medical board for failure to comply with the Death with Dignity Act," she explained.

From 1998 to 2012, physicians have been almost 100% compliant with the criteria.

Another question to be grappled with is the relation between PAD and palliative care. Is there a synergy with palliative care, or are they opposing forces?

"As a palliative care physician, I sometimes wonder if this is the easy way out," she noted.

But again, teh fears appear to be unfounded; 90% of patients who sought out assisted dying in Oregon were already enrolled in hospice.

Other states with legal PAD tend to be "palliative care friendly," with the exception of New Mexico. "Washington, Oregon, and Montana get high marks, and California is pretty close to them," Dr Ramchandran explained.

But there is a caveat in all of this, she cautioned. "Most of our data come from homogenous populations in Oregon and the Netherlands. But California looks really different, so I have questions. Are these data going to hold up in our state?"

Another red flag is the issue of depression. Only a very small percentage of patients are being referred for a psychiatric evaluation, Dr Ramchandran noted.

In one cross-sectional analysis of patients who had requested PAD, about 20% met the criteria for depression, yet the healthcare professionals who interviewed them didn't think it was issue, she said. "There seems to be something at cross purposes, if the patients are undergoing clinical depression and the providers aren't seeing it."

The main reasons that patients give for wanting to end their life — fear of losing autonomy, inability to enjoy life, inability to engage in things that give them meaning — is also disturbing. "It makes me wonder if we are losing sight of the true issues at hand, which is that patients are struggling and suffering, and we need to address them rather than ignoring them," she said.

Dr Ramchandran believes that PAD might be indicative of a much bigger problem. "The whole idea of PAD came from patients and not physicians," she said. "It seems that we are in a society where patients and clinicians are a little bit at odds with each other in the way we are practicing end-of-life care. And we are not doing very well."

She added that about two-thirds of patients do not discuss their end-of-life goals, so they often end up with care they don't want, like dying in the hospital when they would prefer to be at home.

"I would like to change this from 'end-of-life goals' to 'living with serious illness'," Dr Ramchandran said. "If you start with end of life, then you've missed the boat."

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