End-of-Life Options: What Are They and Why Do They Matter?
by Barak Wolff, Founding Member, NM End-of-Life Options Coalition
I often speak of “end-of-life options” as if everyone knows what I am talking about. It’s the name of our Coalition and in the title of our medical aid in dying bill. But sometimes it’s important for me to step back from my assumptions and jargon in order to clarify the meaning of terms, priorities and the parameters of our work, so that it is clearer to me and to others.
Given our Coalition’s short-term focus on enacting medical aid in dying here in New Mexico, some may think that all we are about is promoting that specific end-of-life option over other choices that folks can and do make all the time. Such is not the case. It is not about one option vs. another; it is about supporting all those who try to have the kind of death they seek… whatever that may be. Our Coalition is actively engaged in supporting and educating about advance care planning so that we all have an understanding of our rights and our choices as our journeys evolve. Let me explain further…
First, it’s important to point out that not everyone has end-of-life choices. There are sudden deaths from trauma, cardiac events and other such unanticipated life-ending episodes. In other cases, folks may be overtaken and overwhelmed by a physical decline that leads to death. Sometimes there are no choices to be made…it just happens too quickly. However, many of us hope to have the opportunity to explore options, decide what treatments and care we wish to have and when, and have a say in how it goes down at the end.
Our fundamental right to make decisions about our health care stems from the NM Uniform Health Care Decisions Act (UHCDA) which provides us with the right to self-determination. It is this law, passed in mid-1990s, that authorizes and spells out the requirements for advance directives, and gives us the right to appoint a surrogate health care decision-maker for when we may become incapacitated. Thinking through and writing down our preferences before we become ill and appointing a proxy decision-maker is what we call Advance Care Planning. It should be an ongoing process that we update as we age and our responsibilities and circumstances change, and as our physical health inevitably declines, if we are fortunate enough to live that long.
If we are fortunate enough, we get to decide for ourselves what health care we want, where we want to get it, how much care to receive, and when to start and when to stop medical treatments. If we don’t make these decisions, or at least participate fully in them, rest assured, others will. When this is accomplished while we are younger and healthier, it is often theoretical…this is what we think we will want, knowing that we can always change our mind at any time. But to get it down in writing becomes critically important in case we lose capacity, since we want our surrogate or proxy to be able to speak on our behalf and carry out our wishes if at all possible.
A basic premise is that “there are no right and no wrong answers” – our choices can be as personal and as detailed as we care to make them. Although we can welcome their input, it’s not for spouses or children or religious leaders or health care providers to decide on our behalf . . . it’s up to us . . . if we care to. So whether someone believes and prioritizes that they wish to try all available treatments and fight for life as long as possible, or move more quickly towards comfort care to have more control and avoid end-of-life pain and suffering as much as possible, or something in between . . . these are all choices that deserve our support, our respect and our compassion.
At some point when we get a serious, life-threatening diagnosis it all becomes more real, the discussion of choices more precise and again, we get to decide among a range of options:
- treat fully and aggressively right to the end if that’s where it goes – try everything possible until the last dying breath.
- start treatments and then re-evaluate options if they are not working or if side effects are too debilitating . . . perhaps try other treatments.
- stop treatments (or never start treatments) and opt for comfort care, usually provided holistically by hospice to maximize one’s remaining time.
- and, if suffering becomes unbearable, hasten death by Voluntary Stopping of Eating and Drinking (VSED) or Medical Aid in Dying (in states where it is legal).
These are among the end-of-life options that we have the legal right to choose. The mission of NMEOLO Coalition is to “inspire individuals, healthcare providers, organizations and communities to understand and advocate for a full range of end-of-life options for all New Mexicans.” We advocate for and work to provide comprehensive, culturally sensitive, accessible information about advance care planning; we promote individuals having robust conversations with their family and loved ones about their choices; we advocate for accessible palliative care and locally available hospice services; and we support the full range of end-of-life options equally with understanding, compassion and love for all people as their journey winds down.
Until next time, be safe out there and vote, vote, vote!!
Bill Summary: 2021 Elizabeth Whitefield End-of-Life Options Act
Back in July, we reported on the Coalition’s work and planned activities to pass medical aid in dying legislation in the upcoming 2021 Legislative Session. We described the three phases of our advocacy – Phase 1, July – November 3rd, is “Pre-General Election” when most candidates will be working hard to reach out to their constituents in order to listen to peoples’ concerns/priorities and influence voters to vote for them. Phase 2, Nov. 4th – January 15th, which we can call the “Pre-Legislative Session” is when we will know exactly who our lawmakers will be and we will continue to educate and advocate for our cause. And Phase 3, January 19 – March 20th, is the actual 60-day “Legislative Session,” when we will work to pass our bill and send it to the Governor for signature.
Now in October, we have completed one of our main Phase 1 goals to develop a Discussion Draft of the actual bill – The Elizabeth Whitefield End-of-Life Options Act. It is very similar to the final 2019 bill which was modeled after the Oregon Death with Dignity bill authorized in 1997.
In addition to drafting the proposed legislation, we have also created a two-page Bill Summary that describes the provisions and safeguards of the proposed bill in layman terms. Both the Bill Discussion Draft and Bill Summary will be shared and used to inform candidates, legislators, and the general public about medical aid in dying. As we take these out into the community and hear feedback about the proposed legislation, we will update the Discussion Draft and Bill Summary as needed. This community discussion will continue throughout the next few months until we pre-file the bill in early 2021, just before the 2021 Legislative session. To view the Bill Summary, click here. For Bill highlights, eligibility criteria and key principles, click here. And finally, for a copy of the Bill Discussion Draft, email us at firstname.lastname@example.org.
Upcoming Event: Before I Die New Mexico Festival
The 4th annual Before I Die New Mexico Festival will begin Friday, October 30 and run through Monday, November 2, 2020. The four days of activities include virtual field trips with prerecorded videos, daily online theater and movie events, book and panel discussions, and Death Cafe conversations.
The festival is the brainchild of Gail Rubin. Rubin is a CT, or Certified Thanatologist, a pioneering death educator, a TEDX speaker, TV/radio show host, and author of the award-winning books: A Good Goodbye: Funeral Planning for Those Who Don’t Plan to Die; Kicking the Bucket List: 100 Downsizing and Organizing Things to Do Before You Die; and Hail and Fairwell: Cremation Ceremonies, Templates and Tips. Gail, also known as the “Doyenne of Death ®,” uses funny films to help start serious conversations. She is a breast cancer survivor and a pioneer of the Death Cafe movement in the U.S. Her motto is “Talking about sex won’t make you pregnant, and talking about funerals won’t make you dead.”
One of our national partners, Compassion & Choices, is an event sponsor and several of the NM EOLO Coalition steering committee members will be presenting over the weekend. Cost of the festival: One day pass = $20; Video/Theatre Experience = $20; Death Café Experience = $20; General Admission = $50; VIP Festival Experience = $100. For more information: www.beforeidienm.com
Here are some of the featured offerings:
- Workshop: “Why You Need an Advance Healthcare Directive” – On Saturday Oct. 31 at 11:00 a.m. join the Coalition’s Albuquerque Action Team leader, Jan Wilson, who will discuss why having an Advance Healthcare Directive is important, how to choose your health proxy, what to include in the directive and how to have that vital conversation with your loved ones.
- Book Discussion: Cruel Death, Heartless Aftermath: My Family’s End-of-Life Nightmare, and How to Avoid It
by Barbara Mancini. Sunday, Nov. 1 at 12:00 p.m. (remember to set your clocks back the night before for daylight savings time)! In 2013, Mancini was arrested and prosecuted in Pennsylvania on the charge of aiding the attempted suicide of her dying 93-year old father after handing him his prescribed morphine five days before his death. A conversation with the author.
- Panel Discussion: “Prospects for Medical Aid in Dying in New Mexico” – Join members of the New Mexico End-of-Life Options Coalition at 1:00 p.m. on Sunday Nov. 1 (remember to set your clocks back the night before for daylight savings time) as they discuss the path to pass state legislation authorizing medical aid in dying in the 2021 NM Legislative Session. Participants include State Representative Debbie Armstrong; Barak Wolff, NM End of Life Options Coalition; Rob Schwarz, Emeritus Professor, UNM Law School, and Elizabeth Armijo, Compassion & Choices.
For more information about this panel and the Mancini book discussion, watch this video clip. You can also join the discussion through a Facebook Live: https://www.facebook.com/events/256959192307206.
Q: If medical aid in dying is authorized in New Mexico, how will terminally ill patients request medical aid in dying?
A: In jurisdictions where medical aid in dying is authorized, there are provisions and safeguards in the laws that specify the conditions for eligibility. In New Mexico, to qualify for life-ending medication under the proposed Elizabeth Whitefield End-of-Life Options Act, one must be:
- 18 years of age or older.
- Diagnosed with a terminal illness that is incurable and irreversible and likely to cause death within 6 months.
- Mentally capable of making an informed decision.
- Physically capable of self-administering the life-ending medication.
A prescribing health care provider may provide a prescription for medical aid in dying medication to an individual only after the individual has met the above eligibility requirements. If the individual is not enrolled in hospice, they must also have their terminal prognosis confirmed by a consulting health care provider. Once qualified, the individual must complete a “Request for Medication to End My Life in a Peaceful Manner” Form acknowledging their understanding of their terminal condition and their request for aid in dying. The form must be signed and witnessed by two persons, only one of whom can be a family member.
If either of the health care providers have a concern about the individual’s mental health history or mental capacity to make an informed decision about ending their life, they may require an additional referral to a mental health professional to determine if they have capacity with regards to end-of-life medical decision-making.
Once all of these steps are taken and the individual is fully qualified, a prescription for the aid in dying medication can be written and then filled after a forty-eight-hour waiting period. Even after the prescription has been filled, the individual can choose whether or not and when to use the medication to achieve a peaceful death.
Countdown to the 2021 NM Legislature
We’re getting so close to the start of New Mexico’s next 60-day legislative session, when we anticipate that our previous bill sponsors will re-introduce a medical aid-in-dying bill! Just three short months to the start of the 2021 Legislature.
Our activities now will be pivotal to the future success of our campaign. Click the following link to let us know why you support authorizing medical aid in dying in New Mexico: https://compassionandchoices.org/survey/are-you-ready-to-help-win-in-new-mexico-add-your-name/
Title: Cruel Death, Heartless Aftermath: My Family’s End-of-Life Nightmare, and How To Avoid It
Author: Barbara Mancini
Review by: Mary Kay Brady, Las Cruces Action Team
Once the advance directives and health care proxy are prepared, most of us think the “heavy lifting” is over – it may not be that easy. There are still so many obstacles that can prevent us from having the kind of death we wish to have – taboos about death education, religious push back, ignorance, insufficient pain management, and the medicalized mind-set that everyone can be returned to good health – to name a few.
Author Barbara Mancini was charged with a felony and faced up to ten years in prison for allegedly assisting in the death of her terminally-ill, ninety-three-year-old father. Her father, Joseph Yourshaw, knew his end was near and had carefully planned so that he would have a peaceful and dignified death. He completed an advance directive, appointed Barbara as his health care proxy, and enrolled in home hospice care. He made it clear: he wanted to die at home, in comfort and with dignity, not at a hospital.
It was not to be so. His death was full of pain and loss of dignity. The book tells that story and the aftermath for the survivors. For additional insight, don’t forget to join the Before I Die NM Festival on November 1, 2020 at 12:00 p.m. (registration details above), where the author will be discussing her book.
This is a wonderful book full of details and helpful resources that will help you prepare and follow through on making and communicating your plan for a good death – in peace and with respect.