What it takes, money and otherwise, for patients to kill themselves in California

July 02--One year in, California's end-of-life law has made it easier for people with terminal illnesses to choose when they want to die. But those closest to the process said it can still be a taboo subject for the patients' families, friends and medical providers.

While it has become permissible for doctors to prescribe death-inducing medications since the End of Life Option Act took effect on June 9, 2016, the law doesn't require any medical provider or facility to help a patient die. Many hospitals and pharmacies are declining to get involved in the process even though it's now legal.

And the opposition that existed before the law's rollout -- based on various religious, moral and technical grounds -- continues today.

Last week, the state released its first report on the law, which allows physicians to prescribe life-ending medications to anyone of sound mind whom they judge has six or fewer months left to live. The analysis found that 173 doctors across the state wrote 191 such prescriptions from June through December of last year, and that 111 patients actually used those prescriptions to commit suicide.

The California Department of Public Health doesn't plan to release 2017 numbers until next year, so it's unclear how many more of these prescriptions and resulting deaths have occurred to date. But Compassion & Health, the nonprofit group that pushed for the legislation, said it knows of 504 such deaths during the law's first year.

Today, the picture of exactly how this new statute is unfolding in San Diego County is a bit hazy. The state's report did not categorize assisted deaths by counties or broader regions of California, and it didn't quantify physicians' views on the law.

When asked last week, some of the San Diego area's largest medical providers -- including Kaiser Permanente, Sharp HealthCare, Scripps Health and Palomar Health -- said they generally allow physicians to help terminal patients with end-of-life planning in those patients' own homes or, in some cases, in medical offices. Most prohibit the dispensing of life-ending drugs from their pharmacies or the administering of those medications in their hospitals.

Roman Catholic doctrine bans such practices in Catholic hospitals, medical buildings and programs affiliated with the church, including hospice services. In San Diego County, that means the Scripps Mercy hospitals in Hillcrest and Chula Vista, the medical office buildings on their grounds and their hospice program bar doctors from participating in any aspect of the End of Life Option Act.

The same policy exists for all 51 Catholic hospitals in California, said Lori Dangberg, vice president of the Alliance of Catholic Health Care.

Then there's the issue of money. Namely, it can be expensive for patients to end their lives according to the new law's provisions.

Seconal, the medication most preferred by physicians and patients for assisted suicide, costs $3,400 per dosing, said a North County pharmacist who sells the drug for end-of-life cases. She identified herself only as Angela and asked that her pharmacy's name not be published for fear of backlash from some business partners.

In March 2016, less than three months before California's law took effect, Valeant Pharmaceuticals increased the price of Seconal from $1,500 to its current rate. Although the company released a statement that said linking the new law and its price hike "defies common sense," it has faced significant criticism for the move.

The medical community subsequently developed a less-expensive compound for assisted suicide that sells for about $600, but in some patients, that formulation may take a day or more to achieve full effect. Seconal usually acts much more quickly, doctors said.

Faye Girsh, founder and president of the Hemlock Society of San Diego, which has been involved in right-to-die issues for three decades, said she and others in her advocacy community generally view the past 12 months as progress.

"We do feel it is a quantum leap in the right direction, but it has not been easy to use the law here. It is complicated and difficult to find doctors, hospitals and hospices that will participate, and it's difficult for many to pay for the medications," Girsh said.

In addition to California, so called "aid in dying" laws exist in Oregon, Washington, Vermont and Washington, D.C. Also, a 2009 court order legalized the practice in Montana.

Many organizations continue to fight efforts to enshrine in law any form of physician-assisted death, which they call physician-assisted suicide. A coalition had sued to stop California's law from taking effect, and although the request for a temporary injunction was denied, the suit continues.

Marilyn Golden, senior policy analyst for the Disability Rights Education and Defense Fund, said the nonprofit group opposes the End of Life Option Act for several reasons, including concerns that legalizing medically assisted death provides a cheaper alternative for insurance companies -- which may not want to pay for expensive curative treatments. The organization also believes the process of diagnosing a terminal illness remains error-ridden.

"Our community is full of people who have been misdiagnosed as terminal, and not necessarily just one time in their lives but many times," Golden said.

She also expressed worry about what she sees as lack of official oversight in the assisted-suicide process, such as having no requirement that an independent observer be present when patients take medication to kill themselves -- to verify that those patients truly wanted to commit that final act.

Amid the ongoing controversy, some physicians have joined the end-of-life movement.

They include Dr. Bob Uslander, a former emergency medicine specialist who started his own palliative care practice in Del Mar. He said his phone started ringing with assisted-suicide inquiries shortly after California's law took effect. To date, Uslander said, he has written nearly 30 prescriptions for life-ending medication to patients from as far away as Los Angeles and Riverside counties.

He also said many people have told him that they approached other doctors for such help but got denied. Most patients interested in ending their lives have found him through the recommendations of fellow physicians, nurses, hospice workers and other health providers, he added. He doesn't accept insurance and provides his services on an income-based sliding fee scale.

Uslander said while he didn't seek out this segment of patients, he has come to consider it a privilege to help people gain control and dignity in their final stretch of life.

"I actually find it to be one of the most gratifying things that I've ever done in medicine and in life -- being able to give somebody that gift at the end of their journey and to help them find that ultimate peace and healing," he said.

The End of Life Option Act has very specific steps for doctors and patients to follow.

Patients must ask their physicians for life-ending medication at least two times -- and those requests must be made at least 15 days apart.

A doctor must examine the patients, verify that they have an illness that will likely be terminal within six months and determine that they're mentally competent. Those findings must be verified by a physician who isn't affiliated with the first one.

Patients must then fill out and sign a form requesting the life-ending medication, and the signing must be witnessed by at least two other people. Once a prescription has been written, patients can decide whether to fill it and when. California's law requires them to take the medication themselves; no one is allowed to administer it.

Some who oppose that law have said rather than prescribing assisted-suicide drugs, doctors should simply get better at providing palliative care. This field refers to a wide range of services, from pain medication to mental health counseling to prayer, designed to ease the suffering of terminal patients.

Lori Dangberg, the executive for the Alliance of Catholic Health Care, said proper palliative care can relieve patients' anxieties that their health decline will be a burden on their loved ones.

"If a patient requests physician-assisted suicide, first and foremost, our physicians and staff are trained to work with families on plans of care that address these issues. For the vast majority of patients we have treated, once that palliative care is provided, they no longer wanted to pursue physician-assisted suicide," Dangberg said.

Uslander doesn't dispute that palliative care can go a long way toward easing the burdens of terminal patients. Such care makes up about 80 percent of his practice, he said, and he emphasizes his thoroughness in offering it as an alternative for patients who ask about life-ending medication.

But some people face illnesses so devastating that they simply want an exit, Uslander said. In his experience, he said, it's not physical pain that has pushed his patients to request help in dying, but rather the inability to do activities that they once enjoyed.

"If I wasn't doing it, these people would still be struggling or they would have died very difficult, challenging deaths. ... These people are looking at more struggle, more suffering or having to basically be medicated to the point of unconsciousness," he said.

Still, assisted-suicide is a step too far for some experts.

Golden, the disability rights analyst, pointed to cases where she said the courts have found that some patients have been influenced by heirs, caregivers or others to take their own lives.

"We don't say that nobody will ever be helped by these laws, but what we do say and believe is that for every person that can be helped, there are far more people that can be harmed," Golden said.

In Hillcrest, away from the public debate over end-of-life issues, Jim Black said his friend, John, obtained and used life-ending medication after struggling with pancreatic cancer that increasingly robbed his quality of life.

While the patient's family, partner and other friends opposed suicide, Black said John was insistent.

"He told them, 'I'm going to die anyway, so don't give me that crap. I just don't want to go through those horrible last weeks or months, so I'm going to do it," Black recalled.

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