I am unsure how it came to be, but over the last number of years I have become rather involved in the topic of end-of-life choices.
For one, I sit on the Steering Committee for the Ventura County Coalition for Compassionate Care (VCCCC), a nonprofit organization advocating for the discussion and documentation of end-of-life wishes.
One of our projects I am most proud of is a 15-minute public service video we produced with Kerri Kasem, the daughter of radio host Casey Kasem. Along with others in the video, she demonstrates the importance of making healthcare decisions in advance, documenting them, and discussing them with physicians and family. You can view the video here.
Secondly, I sit on the Clinical Ethics Advisory Committee for a local hospital. One of the committee’s roles is to make a recommendation if there is a disagreement between the physician and patient and/or their family over starting, continuing, or ending treatment, such as breathing tubes or feeding tubes.
This committee also makes decisions for unrepresented patients, oftentimes older adults who cannot speak for themselves because of their medical condition (for example if they are on a ventilator, in a coma, or have cognitive impairment) and have no family or friends to speak for them.
As part of our committee work, we recently read Death Interrupted: How Modern Medicine Is Complicating the Way We Die by Blair Bigham MD.
Through well written and compassionate stories, the author explains the anguish that doctors and families face when confronted with the miracles of modern medicine.
Those miracles may include ventilators that move the air in and out of our lungs or ECMO therapy that does the work of the heart and the lungs when a patient’s own organs are too sick or weak to work on their own.
When these interventions don’t work as hoped, it creates anguishing decisions for family members to take their loved one off these life sustaining systems.
In the “olden days” when we advocated for individuals to have conversations with loved ones about their end-of-life wishes, these types of interventions didn’t exist. Today they are more common and conversations with physicians and family must include when to cease treatment, in addition to what treatment you want.
April 16, 2024 is National Healthcare Decisions Day, a day is set aside to help us think about times we might need to make some decisions about our healthcare but may be incapable of doing so. It is a day for all of us to make known to our health professionals and families the kind of care we wish to receive and have those wishes respected and met.
One way this can be done is by completing an Advance Health Care Directive (California Probate Code Section 4701) and having it signed by a notary. This form will ask you to designate an Agent(s) to make healthcare decisions for you, as well as what kinds of decisions you want.
Once completed and notarized, you can provide a copy to your physicians and, if you like, discuss your choices with them. Your primary care physician can receive insurance reimbursement for having this conversation, so don’t be afraid to ask.
If you have an attorney, they can help you with completing this form. Senior Concerns also offers free Legal Concerns support to do so. You can call 805-497-0189 to set up an appointment.
Your physician may also have a bright pink form called a Physician’s Order for Life Sustaining Treatment (POLST) that is a legal medical order that will be followed. They should walk you through the form and discuss your choices with you. They sign the form and provide a copy to you.
I know this all sounds a bit overwhelming, and sometimes there are cultural or religious beliefs that make thinking or talking about end-of-life uncomfortable. But I can tell you from my work with VCCCC.org and the Ethics Committee, having these conversations allows you to be in control and prevent someone who does not know your beliefs from making choices for you.
Use April 16th as a day to reflect, act and inform others of your choices. It will bring you peace of mind.
