End-of-Life option laws should avoid needless red tape

Jan 4, 2019 Kim Callinan author medical aid in dying

This op-ed originally appeared in McKnight's Long Term Care News

State legislators are beginning to recognize that autonomy and expanded choices at life’s end are core values that the American public is increasingly demanding. Since 2015, one new state or jurisdiction each year has authorized medical aid in dying: California (2015), Colorado (2016), Washington, DC (2017) and Hawai‘i (2018) and roughly two dozens states have introduced legislation annually. Medical aid in dying is a medical practice that allows a mentally capable, terminally ill adult with six months or less to live to request from their physician a prescription for medication that they can decide to take to peacefully end unbearable suffering.  

The implementation of these laws in the most recently authorized states coupled with decades of experience from the first four states to authorize this end-of-life care option (Oregon, Washington, Vermont and Montana) provides lawmakers with a robust body of evidence to draw from as they draft legislation.   

The evidence is clear: at a time when compassion should be the guiding principle in medical practice, patients are facing more barriers to care than are necessary. If lawmakers want to improve medical aid in dying laws, then let’s address the real problem: There are too many regulatory roadblocks already! I am not suggesting changing the eligibility requirements, as our opposition will suggest. I am merely suggesting that we drop some of the regulations that put unnecessary roadblocks in place.

The most obvious is the waiting period (15 days, except in Hawai‘i, where it is 20 days) between the terminally ill patient’s first and second request. By the time a patient has navigated the entire process, they have waited plenty. Lawmakers should also consider extending prescribing privileges to nurse practitioners and reducing overly cumbersome reporting that deters doctors from practicing.  

Medical aid in dying has been safely practiced in authorized jurisdictions for a combined 40 years without a single case of abuse or coercion. Medical aid-in-dying laws already include strict eligibility requirements. A patient must be an adult, have six months or less to live, be mentally capable of making an informed healthcare decision and be physically able to take the medication themselves. And all the introduced bills and enacted laws include more than a dozen regulatory requirements. Two doctors must confirm that the patient has six months or less to live — due to terminal illness, not because of age or disability. Two doctors and two independent witnesses must confirm that the person is making the request voluntarily. Patients must then wait (between 15 and 20 days depending on the state as I noted above) between their first and second verbal request before they can obtain their prescription.  

Medical aid in dying is the most regulated end-of-life care option — far more regulated than other end-of-life care options — which have far greater risk for abuse or coercion, such as palliative sedation. Palliative sedation requires a third party (a doctor) to administer medication to put the person into a coma to relieve pain and to withhold fluids and nutrition until the patient dies from dehydration or the underlying disease. There is absolutely no regulatory oversight with palliative sedation. Doctors are trusted to practice medicine, rather than legislating unnecessary government red tape and intrusion.  

The current process for qualifying medical aid in dying works, but it is so cumbersome and time-consuming it prevents too many people from accessing the law.

A study by Kaiser Permanente Southern California showed that about one-third of patients who requested the option of medical aid in dying were not able to get through the process and obtain a prescription before they died. This Kaiser study was done in a supportive health system. Imagine the experience of a dying person in a system that refuses to allow doctors to participate. Those patients are forced to find a new health system and re-establish care with a new doctor before they can even begin the process!  Finding a new doctor is a challenge for most of us; imagine trying to do that if you are dying!

The data in Oregon over the last 20 years demonstrates that people don’t take the prescription the moment they get it, but they do get immediate peace of mind, knowing they have it, if they need it. Dying patients trying to access the law are seeking compassion, not red tape. Let’s make already safe laws more accessible.