Personal autonomy is one of the most cherished rights of an individual, and one of the circumstances in life when this autonomy becomes most crucial is with regard to end-of-life planning. The national nonprofit Compassion & Choices (C&C), one of the premier organizations advocating for this end-of-life autonomy, cautions that the right of a person to have end-of-life preferences honored regarding medical treatment—or the cessation of it—requires careful attention, and a fair amount of effort in some cases. This right can also be undermined by those who choose to challenge it at a policy-wide level.

(Note: Compassion & Choices is an AgeWise Colorado Provider. You can link to C&C on our website at:  Compassion and Choices – AgeWise Colorado. Among its key areas of advocacy are medical aid in dying, hospice care, palliative care, advance care planning, end-of-life care with dementia, health care equity at end of life, and preventing unwanted medical treatment.)

“Death is universal,” C&C wrote in 2022 to supporters. “And the desire not to suffer is shared by many, no matter their beliefs.” In fact, majorities in America favor having the option of medical aid in dying, and this is true across different ages, different geographic regions, and across political party lines. According to C&C, as of 2022, 11 U.S. jurisdictions had approved medical-aid-in-dying measures, covering about 20% of the nation’s population.

In Colorado in 2016, approximately 65% of voters approved Proposition 106—“Access to Medical Aid in Dying.” This is also referred to as the End-of-Life Options Act. Statistical reporting through 2021 showed that since this measure passed, 777 Coloradans had received prescriptions for medical aid in dying, written by 198 unique physicians. Of the 777 scrips, 583 medications were actually dispensed. Median age of the requesting patients was 73; some were as young as their 20s, others as old as their 90s. One statistical report listed “residence” as by far the most common location of death (upwards of 90% of the total), followed by “nursing home” at about 10%, with “hospice” and “hospital” trailing in single-digit percentages. This dovetails with observers who have said they believe medical aid in dying harkens back to the way death used to more commonly happen decades and longer ago—i.e., in the home.

Common conditions aid-in-dying patients were suffering from included cancer, progressive neurological disorders such as ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease), Parkinson’s disease, and severe heart disease and COPD (chronic obstructive pulmonary disease). Records are not required or kept on how many patients actually use their prescribed medications. It is known that a certain percentage request and receive such meds largely for the reassurance they will have them if needed.

Some basics of Colorado Medical Aid in Dying

A number of important safeguards were written into Colorado’s End-of-Life Options Act to ensure it remains safe, while protecting dying persons against abuse. Including these:

1. Individuals must be terminally ill.
Medical aid in dying is available only to a person who has a life expectancy of six months or less.

2. Individuals must be mentally competent.
The aid is not an option for persons with dementia or anyone else who lacks the mental capacity necessary to make informed medical decisions. There is a lengthy process for consent. Aid-in-dying individuals must affirm and reaffirm their desire for aid in dying with voluntary expressions (two oral, one written), two weeks apart. They can change their mind at any point.
3. Two physicians must confirm the prognosis and that the individual can make medical decisions.
Besides confirming the prognosis, the physicians need to determine whether the individual is acting voluntarily and has made an informed choice of aid in dying. They must also inform the terminally ill patient about the full range of end-of-life options, including hospice, palliative care and pain management, as well as the potential use of medical aid-in-dying medication. They are to also clarify that  the patient may choose to obtain the aid-in-dying drug, but then elect not to take it.

4. Individuals must be an adult resident of Colorado.
This aid is not an option for children. Patients must be age 18 or older.
5. Individuals must perform the life-ending act themselves.
Family members or friends can help prepare the prescription medication, but the law requires that the individual must consume the lethal medication on their own.

Besides having conversations with all appropriate persons, the first formal step a patient would take to access medical aid in dying is to fill out a request form. According to the Colorado Department of Health and Environment, this form must substantially conform to the “Request for medication to end my life in a peaceful manner” form as delineated in state law (Section 25-48-112, C.R.S.) The form repeats the statute and may be used for the written request for medical aid-in-dying medication. The C&C website also offers Colorado-specific forms and goes into considerable detail about other requirements and procedures to follow.

Not always smooth sailing

The legally prescribed steps and criteria for obtaining medical aid in dying mean it’s not a quick process. Which is fitting for a decision requiring such deep deliberation.

Colorado’s experience has pointed to additional “speed bumps” that have occasionally extended the process even more, causing some frustration. Paperwork that has to be completed by both patients and physicians can be time-consuming. Also in a survey, Colorado MDs expressed need for more knowledge of what they can or cannot do, what they should or should not do. They were hesitant when issues of legal liability were not crystal clear. This situation is steadily improving.

State law requires both an attending and consulting physician for every case. This can become an issue, especially when physicians have their own private ethical hesitation about what is admittedly a controversial practice in medicine. When surveyed, an overwhelming majority of physicians, 81 percent, said they were willing to discuss medical aid in dying with a patient, and 88 percent said they would make a referral for their patient to seek out a program. However, the research also revealed that while the great majority of physicians were willing to refer patients for medical aid in dying, less than half (48 percent) were willing to act as a consulting physician. And only 28 percent were willing to act as an attending physician.

Even when surveyed for actual experience (not just preference), a gap persisted. More than a quarter (27 percent) of physicians surveyed had already referred a previous patient for medical aid in dying, but only 13 percent had actually participated as a consulting physician for treatment and only 8.5 percent had acted as an attending physician. There have been reports that some patients seeking medical aid in dying have had to travel to a different location in Colorado (such as Denver—or even outside the state) in order to secure all the assistance they need.

Legal challenges

Numerous legal challenges to medical aid in dying have been made and continue to arise. It is something C&C deals with on an ongoing basis. This is also where your own end-of-life autonomy can be put at risk.

“Because we are the only national organization with a legal advocacy program focused on end-of-life choice and care,” C&C states, “our role as an amicus curiae (friend of the court) is significant. By weighing in as an amicus, Compassion & Choices has the potential to positively impact the direction of a case. Just as lawmakers’ perspectives change after hearing their constituents recount (or experiencing first-hand) the horrific death of a loved one, we could find similarly unexpected support from judges.”

C&C asserts that “any ruling that undermines patient-directed care undermines all patient medical decision-making.” Examples of such undermining efforts C&C has faced include ignoring the decision-making authority of a patient’s health care proxy or power of attorney, redefining the legal definition of death in order to keep patients on life support against their will, and allowing physicians opposed to medical aid in dying to refuse to make a referral or transfer patient records to another physician willing to provide this option. One lawsuit against medical aid in dying even contended a physician need not tell a patient such an option is available, thereby denying the patient knowledge needed to make informed decisions about care and treatment.

Other cases C&C has had to confront are situations where health care facilities, mainly religiously affiliated ones, have ethics policies in place that will not allow a patient to access medical aid in dying. This can involve such a facility literally not honoring a patient’s advanced directives or living will. Or refusing to abide by the instructions of a patient’s legally appointed health care proxy or power of attorney. In some instances, patients are given treatments they specifically said in advance they would not want, which can lead to a prolonged and more painful dying—exactly what medical aid in dying is designed to prevent. And C&C is persistently defending the option of medical aid in dying against broader attacks waged by legislatures or lawsuits.

What you can do

Because the medical-aid-dying process can be complicated and get a little bureaucratic, and because your end-of-life preferences can at times be put at risk, to protect your autonomy regarding those preferences as to what health care treatments—including the option of medical aid in dying—you do or do not want under certain circumstances, steps to take include the following:

  • Be clear and specific about your preferences in your advanced directives and/or living will.
  • Inform your physician(s), your health care power of attorney, family members, and any other close acquaintance of your preferences and make sure they understand them.
  • Learn what Colorado’s requirements and procedures are for accessing medical aid in dying. Here is the link to the statute mentioned above: tinyurl.com/3xpwmm4b  
  • Ask your physician(s) if they feel they are fully knowledgeable of their duties with the aid-in-dying process and are willing to fill the needed role(s) in that process.
  • If your state has approved medical aid in dying legislatively or via ballot, as Colorado has done, keep informed of any challenges to it and be prepared to express yourself on the issue if the need arises.
  • If you have a personal story to tell, be willing to tell it when it can have a positive effect. Such as a) a loved one who suffered unnecessarily at end of life due to preferences being denied or b) someone who clearly was spared needless suffering at life’s end because preferences were honored.
  • If possible, when facing circumstances (such as terminal illness) that you believe might lead you to consider an option of medical aid in dying, try to ensure you will be cared for in facilities that will honor your preferences.
  • Consult with your attorney about including in your advanced directives and living will a stipulation that you be transferred to an alternate accommodating health care facility if you were to find yourself in one that you suspect will not honor your end-of-life preferences.

In conclusion, it is obvious that for anyone who values preserving autonomy with end-of-life preferences, it’s important to know the variables involved, the procedures to follow, and the challenges to watch for. It is vital to stay aware and informed of any new developments that arise. One of the best sources for doing that is being familiar with Compassion & Choices. Which, again, you can easily link to here: Compassion and Choices – AgeWise Colorado