Death Panel? That Would Be You!

Article taken from pages 10-11 of January/February Newsletter 2017

By Adrianne Fugh-Berman and Charlea Massion

In 2016, California initiated the End of Life Option Act (EOLOA), becoming the 5th state to legalize medical aid in dying.[1] (Colorado became the 6th later that year). California, with its 40 million citizens, may be the tipping point that catalyzes many more states to legalize this choice.

The EOLOA allows a mentally capable, terminally ill Californian with six or fewer months to live to request medication from their doctor that will help them die. To qualify, patients must be an adult, be acting voluntarily, be able to administer the drugs themselves (by mouth or feeding tube), and demonstrate they’re making an informed decision. The individual must also be advised that, even if they obtain the aid in dying medication, they are completely free never to use it.[2] The law specifies that no one can qualify for EOLOA based solely on disease, disability, or age.

It is essential for a patient who is pursuing EOLOA to have optimal pain and symptom management so they are not driven to end their life because of unbearable pain, anxiety or other symptoms. A patient must make two oral requests at least 15 days apart, and one written request, to a physician willing to prescribe the medication, and then must be evaluated by a second physician. Both physicians must agree the patient meets EOLOA’s requirements, and each physician must ask the patient, without anyone else present, if he or she is acting voluntarily. If either physician questions the patient’s mental capacity, the patient must be evaluated by a psychologist or a psychiatrist.

Significant barriers to accessing the process exist. Some physicians have opted out of EOLOA because of ethical concerns. Many physicians do not feel adequately educated about EOLOA and are thus reluctant to take part. Some are intimidated by the strict procedures and extensive paperwork required. And, physicians who work for religiously affiliated health organizations that oppose EOLOA cannot participate.

Although some insurance companies cover EOLOA medication, cost is a barrier. The law doesn’t specify what medication physicians prescribe. The most common medication prescribed is secobarbital, a generic medication invented in the 1930s that formerly cost under $200. By the time EOLOA was enacted, however, a pharmaceutical company had purchased secobarbital’s only manufacturer, then hiked the price to as high as  $4,000. Less expensive medications are being studied.[3]

Medical aid in dying is a safe and trusted practice. Laws such as EOLOA are an important component of end-of-life care, and these carefully crafted processes can have positive results. In Oregon, which has had medical aid in dying since 1997, there have been no documented instances of abuse. Since the law’s implementation, overall end-of-life care has improved. It’s supported more open dialogue between patients and their physicians. Hospice referrals and the use of palliative care have both increased. Oregon now has the nation’s lowest rates of in-hospital deaths and the highest rates of at-home deaths. Violent suicide among hospice patients has virtually disappeared.[4]

If you or a loved one has a terminal diagnosis of six months or less, live in a state where medical aid in dying is legal, and might consider this choice, it is very important to ask your doctor if she or he can support you. If your physician cannot, it is your right to find a physician who will. When choosing hospice care, it is also very important to ascertain the position on medical aid in dying. Hospices that are part of a religious organization that opposes this choice, can impair or obviate your right to explore this option. (Hospice is the best option for most terminally ill patients, for optimum symptom management and support. In Oregon, more than 90% of patients who chose medical aid in dying are on hospice.)

Compassion & Choices (formerly the Hemlock Society) is a national organization supporting terminally ill people’s right to medical aid in dying. It offers many resources, including a video discussing considerations for patients and families facing terminal illness.[5]

 

References

[1] A word about terminology: Advocates use “physician-assisted death,” “medical aid in dying,” or “death with dignity.” Opponents (e.g., Catholic health care providers) use terms like “physician-assisted suicide,” which emphasizes their view that the process is as ethically and morally unacceptable as suicide.

[2] California Department of Public Health, “End of Life Option Act,” available online at at: www.cdph.ca.gov/Pages/EndofLifeOptionAct.aspx.

[3] Dembosky A, “Pharmaceutical Companies Hiked Price on Aid in Dying Drug, “ KQED News, March 22, 2016. Available online at:  https://ww2.kqed.org/stateofhealth/2016/03/22/pharmaceutical-companies-hiked-price-on-aid-in-dying-drug.

[4] Oregon Health Authority, “Death with Dignity Act,” Available online at: https://public.health.oregon.gov/ProviderPartnerResources/Evaluationresearch/deathwithdignityact/Pages/index.aspx.

[5] See www.compassionandchoices.org