California’s “End of Life Option Act” and Family Dilemmas

Planning for actual death seems to be almost unthinkable, and the majority of us avoid this subject altogether, and in some cultures, it is not even prepared for because that would be considered disrespectful and not honorable.

This article will examine the client and family perspectives and how there can be conflicts because of the enormity and finality of this decision.

We may have heard from either peers or clients that they don’t want to be a burden, and say in jest, “If I have a diagnosis of a long chronic illness or become terminal, I am just going to have an accident while hiking,” or some other message that implies they don’t want to be in a lingering state of pain or discomfort.

When the pain or discomfort of illness is more than one can bear, Californians have the End of Life Option Act that allows those who meet the criteria, to take a drug that will end their life.
Those in the legal profession can see how someone with a serious illness could be unduly influenced by a family member to take advantage of this measure. This issue also brings up mixed feelings, values, and concerns for most of us and can be especially hard to understand for those who fight hard against suicide or have experienced the death of a close loved one.

To qualify, the patient must meet the following criteria:

• Be a resident of California
• Be 18 years of age or older
• Have a diagnosis of an incurable disease that will result in death within six months. A physician determines that the illness is terminal.
• The patient must be “mentally competent” and be able to make his/her medical decisions. This competency is determined by the physician.
• The patient makes two oral requests directly to their doctor for the aid-in-dying drug, at least fifteen days apart. After the two oral requests are made, the patient has to request the drug in writing via a form titled: “Request for an Aid-in-Dying Drug to End my Life in a Humane and Dignified Manner.” The discussion with the physician must be in private with no one else present, to ensure it is a voluntary decision on the part of the patient.
• The patient sees a second physician for consultation to confirm the diagnosis, terminal prognosis and the ability to make sound medical decisions.
• The patient and their treating doctor meet to discuss the following: 1) How the aid-in-dying drug will affect the patient and the fact that death may not be immediate; 2) Alternatives including palliative care, hospice care, and pain control; 3) Whether the patient wants to withdraw their request; 4) If the patient plans to notify next of kin, or have a witness present with them when taking the drug. There is no requirement to do either of these things; 5) If the patient still wishes, the physician will write the prescription. Before taking the drug, that must be entirely self-administered, the patient signs a form stating he/she took the drug voluntarily. Patients who have followed these steps will not be considered to have committed suicide.
• The patient must be able to self-administer the drug – so this could present a problem to those with limited functions.

The Act protects the patient:

1. The patient cannot be denied health insurance, life insurance benefits, or annuities based on requesting the taking of this drug;
2. Health insurers cannot tell a patient that aid-in-dying is covered, unless the patient asks;
3. Health insurers cannot refuse treatments for the terminal illness while at the same time offering coverage for aid-in-dying;
4. A will or contract cannot require a patient to receive aid-in-dying or prevent them from doing so.

As a Family Therapist and Geriatric Care Manager, I have had many clients who wished their lives would end due to illness – but more often due to multiple losses, loneliness, sadness and lack of energy attributed to the aging process. Some have stopped eating and when confronted with “that is a form of suicide,” they begin to eat because, for many, this becomes a moral or spiritual issue.

The converse is true as well with families looking for every possible treatment, hospitalization, and intervention to keep someone who is actually in the process of dying from entering this final stage in comfort, all out of love or the need for this person in their life. Families in this position have great difficulty choosing hospice and require much counseling about what is a gentle death as opposed to over-treatment and its toll, particularly on frail older adults.

It is my belief but not my experience that when individuals choose the “Right-to-Die Act” it will bring up lots of resistance from loved ones, those same individuals who have trouble even with the palliative care. It is also my belief that many people might go through all the steps to gain the drugs, but hold off taking them and die natural deaths because they do not want to hurt those left behind. Only time and research will provide us with information that further explores these issues.

By comparison, the state of Oregon has had such a law for many years and even to this day only about 40% of the individuals that apply actually end their lives in this manner. In reality, 60% choose to allow the natural course of life to bring theirs to a close.

A complicating factor for physicians is that the American Medical Association’s formal ethics policy is against doctors facilitating a patient’s death; including offering information or drugs that enable the patient to perform this life-ending act. Doctors have the choice not to participate in a patient’s decision to end life. However, many doctors support individual choices and will support those who make this choice.

Compassion & Choices is an organization that advocates for the end of life options. They help with education, consultation, policy promotion, and more. The organization has a hotline for clinicians, and additional information for pharmacists, and doctors to connect with resources and trained practitioners. Their hotline number is: (800) 893-4548. Their website is www.compassionandchoices.org.

Compassion, comfort, medicating pain, supporting patients and families at the end of life is the mission of the hospice movement and part of the care plan of Geriatric Care Managers. Way too many individuals and families put off the choices and paths related to death with dignity – which means individuals are in pain longer and have to undergo many hospitalizations needlessly. If they participated in hospice when given a terminal illness diagnosis with a short duration of life projected, they might not seek “a drug” to end their life. In part, these decisions are difficult because it means refusing aggressive treatments, thus facing the realities of death.

On a personal note, I made the hospice decision for my mother, a tough choice. By signing the papers, it gave her the most peaceful and dignified end of life possible, in a home-like setting. She would not have had the choice of “right to die” because of her dementia. However, I have had many clients in the past who would have welcomed such a choice – as hard as it is.

As professionals assisting individuals, it should be our goal to educate, inform and counsel those entering the dying process. In the medical community and the “Care Management” profession, we are now all using “client-centered” plans of care. This means choice, comfort and making these decisions with “informed” consent. It might also mean respecting someone’s right to choose when our own religious or moral codes differ from that of our clients.