Compassionate Care at End of Life

This column will feature articles from members of the organization, Silver City End of Life Options Coalition, who offer education on choosing how to die.

As with all columns on the Grant County Beat, the opinions do not necessarily reflect the opinions of the Beat.

By the Rev. Dr. Jane Foraker-Thompson

Some people think that if you are a devout Christian you can’t support end of life options. That is categorically not true. I speak as an ordained Episcopal priest with six years of theological training. I have also worked with a Religious Alliance in Nevada, consisting of five mainline churches, on social justice issues at the state legislature. We all had to agree on a topic if we were going to lobby for or against a given piece of legislation. Those of us who served on the board of this Alliance had to know and represent the formal positions of each of our churches1 and share that in discussion. Due to this experience, I became very familiar with those positions of the different denominations. I have also taught World Religions so I know the positions of many other religious groups.

End of Life Options, or Death with Dignity, is not assisted suicide as some people mistakenly claim. Suicide occurs in private, and in desperation of some kind, with people ending their own life alone when they may have many years of life before them. In contrast, end of life options are meant for people who are terminally ill and are going to die anyway. These individuals are generally considered to be within twelve months of death and are in pain that often cannot be controlled. Rather than suffer for many additional months, they opt to ask their doctor for a dose of medicine they may decide to self-ingest at some point that will end their life sooner (though some never take the medication and are simply comforted in knowing they have the option). If the terminally ill person decides to use the medicine, they can set the time and place for taking that medication, and they can invite their family and/or friends to be there to celebrate their life.

The occasion can be celebratory, spiritual, and positive. The individual can choose the way they wish to die when they are going to die anyway. It is merciful and humane. Dying this way does not violate most religious principles for most religious groups. After all, when we have a pet that we love that grows so old that they are miserable and may be crippled, blind, incontinent, or in pain, we think it is humane to put them out of their misery. Why can’t we allow humans the same mercy?

By Adrienne Dare of the Silver City End of Life Options Coalition

The Elizabeth Whitefield End of Life Options Act has been pre-filed. The bill, HB90/SB153, will be considered in the 60-day 2019 New Mexico legislative session. This bill would make medical aid in dying (described below) available as a choice to a terminally ill, competent adult if suffering becomes unbearable at the end of life.

A day focusing on the New Mexico End of Life Options Act will take place on January 29 at the New Mexico State Capitol Building in Santa Fe. From 9:00 a.m. to 10:00 a.m., a press conference will be held in the Rotunda with featured speakers including Representative Deborah Armstrong (a bill sponsor), Compassion & Choices CEO Kim Callinan, and Dan Diaz (whose wife used medical aid in dying in Oregon). From 10:00 a.m. to 2:00 p.m. various activities will take place and information packets will be distributed.

In Silver City, our End of Life Options team has been meeting monthly. We have given various presentations and sponsored a viewing of the video “How to Die in Oregon” at the public library. Additionally, we have published a number of articles in this “Compassionate Care at End of Life” column, which we encourage you to read for a more complete background on this topic.

A statewide group established in 2016, the New Mexico End of Life Options Coalition is a broad based and inclusive partnership whose specific goal is to authorize and implement medical aid in dying in New Mexico. The mission 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, so that each individual may choose to have end of life care as they wish.

By Adrienne Dare of the Silver City End of Life Options Coalition

Most people would prefer to die at home surrounded by family and friends while being made comfortable. But even the best hospice or palliative care may not be able to alleviate all types of suffering for all people. As more states follow Oregon’s lead and allow the option of Medical Aid in Dying (MAID, wherein a terminally ill, mentally capable adult requests a prescription they may self-ingest to bring about a peaceful death), more and more people are realizing that MAID is a positive option for the few people who would need it.

Support for this option appears to be picking up momentum, particularly among baby boomers who have watched their parents needlessly suffer because they did not have the option of MAID. Currently about 1 in 5 people in our country live in a place where MAID is legal.

Gallup’s 2017 polling shows 73% of the U.S. population approves of MAID, nearly doubling support since Gallup first polled on the question in 1947. A December 2016 Medscape survey reported that 57% of physicians support this practice, up from 46% in 2010. A majority from faith groups support MAID, including Catholics at 70%.

In October 2014, Brittany Maynard, a 29-year-old California woman with terminal brain cancer, created a video that went viral. She moved her family to Oregon so that she could end unbearable suffering by using Oregon’s Death with Dignity act (at that time MAID was not legal in California). She was making a statement to say all states should allow this option for a peaceful death. Before her video there were only four states with legislation supporting MAID; after this video, 25 states had such legislation. Brittany had a great impact on this movement. Inspired by her advocacy, since 2015 California, Colorado, the District of Columbia and Hawaii have enacted MAID laws, and a number of others are considering such legislation.

By Karen Love for the Silver City End of Life Options Coalition

What if one of the most important legal documents you can have doesn’t require a lot of time or expertise to complete and doesn’t even require a lawyer? That important document is called an Advance Directive (AD), and it makes your healthcare preferences clear in the event you are unable to communicate your medical treatment wishes yourself.

Although several previous articles in this column have touched on the topic, this article will focus solely on the AD: what it entails, what you need to know to complete yours, and where to get the form.

An Advance Directive usually includes a “living will” (enumerating what kinds of treatment you do or do not want to sustain life in the event of a medical crisis) and a medical power of attorney (designating who will speak for you regarding healthcare matters, if you cannot). The time to complete the AD is before a medical crisis occurs!

Recently, my 91-year-old mother experienced a medical crisis that ultimately led to her death. For many years, she had an AD (in which she had designated me as her medical spokesperson), had discussed her wishes with me, and had provided copies of the AD to me and her physician as well as keeping a copy in her purse. Even in the midst of a very stressful situation, I was comforted greatly in knowing exactly what my mother did and did not want with regard to end of life treatments.

By Kelduyn R Garland, PhD, DD, of the Silver City End of Life Options Coalition

Although seven states and the District of Columbia currently allow Medical Aid in Dying as an end of life option (where a terminally ill, mentally competent individual can obtain a self-administered prescription to bring about a peaceful death), New Mexicans do not yet have this choice. However, in addition to the proposed Medical Aid in Dying that will be considered in New Mexico’s 2019 legislative session, there are other end of life options that currently exist for terminally ill patients.

One such option is Voluntary Stopping of Eating and Drinking (VSED), wherein a mentally competent individual with unrelieved suffering from a chronic or incurable and progressive disorder may choose to control their own dying process by making a conscious decision to refuse foods and fluids of any kind. This option is legal in every state – the U.S. Supreme Court has affirmed the right of a mentally competent individual to refuse medical therapies, including food and fluids.

But isn’t death from starvation or dehydration painful?

When people think about someone stopping eating and drinking, they immediately think of starvation and the person being in great discomfort and pain. However, there is a clear and distinct difference between someone voluntarily stopping eating and drinking at the end of their life and some otherwise viable person experiencing dehydration / starvation.

We see people starving to death due to famine / lack of food being provided them, or going on ‘hunger strikes’ as IRA members in Irish prisons have done in protest to British rule, as political activists in US prisons have done, or as Gandhi did in protest to fighting between the Hindus and Muslims during the 1920’s and 1940’s. These cases of starvation occurred for people who were very much alive and in the midst of living, who did not consume food, either by choice or through deprivation. In such cases, the body physiology is geared for life functioning and needs food for fuel, so the individuals go through ‘hunger pangs’ and discomfort when their bodies are deprived of sustenance and they are starving.

This is quite different -- and poles apart -- from someone with no remaining quality of life or at the end of their life. They have come to a point where they actually are not interested in food and do not feel hungry, and, therefore, do not want to eat. This ‘choice’ can also be a natural / default response of having entered the dying process, and because the body’s physiological functions have begun shutting down, the person has no interest in eating or drinking. That person should not be forced to eat or drink, or be put on a feeding tube, unless they have specified in their Advanced Directive / Living Will.

As the end of life approaches, organs (including the brain) go through changes, ‘shutting down’ in their functioning because life is coming to an end. It’s similar to someone shutting down or closing up a house at night when going to bed: lights are turned off; thermostat is turned down; doors, and perhaps windows, are closed… household functions have slowed down for the night.

Our bodies do the same thing as we near death: organs begin shutting down because they are not needed any more for maintaining life. For this reason there is not the pain and discomfort in VSED as there is in starvation. Many times, actually, drinking or eating can bring more discomfort than not doing so. In addition, in VSED, death most commonly occurs from dehydration, not lack of eating, per se.

Although VSED is available to anyone with no prescriptions or ‘permissions’ required, an individual who decides to use VSED does need to plan and does need help. Individuals typically need 24-hour care during this process, and ongoing help such as hospice care from an agency or friends. Legal medications are available to ease possible symptoms of discomfort. When a person reaches this point in his/er life and has stopped eating and drinking, several things can be done to help keep them comfortable. For example, keeping their lips moist so that they do not get dry and crack is important, and can be done with a damp sponge or cloth gently pressed against the lips. There are even specific moisture sponges that can be bought for this purpose.

The prime service and goal that family and friends can provide their loved one during the end of life process is support and comfort care, which in turn is supportive and comforting to them in witnessing their loved one departing in peace.

When a person chooses VSED, the process usually takes about 10 days to 2 weeks (though the length of time depends on many variables like age, physical condition, and illness). A number of internet resources are available to learn more about VSED (and other end of life options). For example, Compassion and Choices has a publication on VSED available for download that includes important considerations for individuals thinking about this option.

With appropriate planning, the VSED process can be a very peaceful time with loved ones as the individual fulfills their end of life wishes.

For more information on end of life options see the following resources:

Compassion & Choices  and Death with Dignity National Center 

To contact the Silver City End of Life Options Coalition or leave comments: sceolocoalition@innerconnections.us

By Kelduyn R Garland, PhD, DD, of the Silver City End of Life Options Coalition

Since the work of Elisabeth Kübler-Ross, MD, brought death & dying out of the ‘closet’ and back into life’s process, people have progressively begun to claim their birthright as to how they want this end time in their life to be. No longer is it the ‘doctor’s decision’ about treatment and care as people make this decision… it is their own. Kübler-Ross’s work, as well as the rise of Hospice Services and films such as the 1980’s “Whose Life Is It Anyway?,” the TV biographic movie “Last Wish,” and Bill Moyers’ four-part documentary for PBS in 2000 entitled “On Our Own Terms,” have contributed to providing the impetus for changes in the medical protocols and delivery of end-of-life care.

A controversial issue that continues to be a part of this arena is the question of what makes End of Life Options (also referred to as Death with Dignity) different from Suicide -- which is a big “no-no” in our society, as well as it being illegal in most states for someone to assist or support in any way or manner another person in taking their own life.

Let’s take a look at the characteristic dynamics and modes involved in both of these concepts, which demonstrate the clear difference between Death with Dignity and Suicide.

By Damie Nelson of the Silver City End of Life Options Coalition

My husband and I have been working on our wills and advance directives for over a year now. We’ve asked questions and received answers from our doctors; we’ve filled out the Five Wishes and done some editing to make the forms fit our personal preferences; we’ve studied the “what if’s” carefully. We’re close to being finished, although we still have some questions to explore and research to do. But there’s one thing we are both very clear on: Neither of us wants to go bankrupt treating a terminal illness or injury.

We are both retired school teachers. Long careers as teachers left us comfortable but not wealthy. We spent our money carefully -- buying used cars and small houses, taking camping vacations, etc. -- and we got used to being frugal. We have no children of our own, choosing instead to focus on beloved nieces and nephews and our many students. We were lucky that we had, and still have, health insurance, though it doesn’t go as far as it used to. The conversations that creating advance directives and wills required made us realize that a serious illness could easily land us in bankruptcy. Modern medicine can keep a body alive longer, but there can be tremendous cost. The surviving spouse could be thrust into poverty and, possibly, homelessness, a hard-earned retirement nest egg used to pay mounting medical bills instead.

By Connie Hostetler of the Silver City End of Life Options Coalition

The challenge for New Mexico to join with seven other states plus the District of Columbia will be placed before our legislature in 2019. Will we stand with the majority of Americans who believe that Medical Aid in Dying is part of the evolution from doctor-driven to patient-driven medical care, or will we refuse to make a stand?

What is accepted in the culture of this country has changed over the years. My mom remembers that throwing trash out the window of the car was totally acceptable in her day. My dad smoked cigarettes in the car during family vacations. My son stood in the front seat of the car behind my right shoulder. My parents never questioned the medical system in this country. We all have experiences of friends or family members who have lived the final days, months and years of their lives in pain, incontinent in nursing homes, in and out of the hospital, surgery after surgery, procedure after procedure, medication after medication. Do we or do we not have the right to determine what medical treatment is acceptable to us? More and more we have begun to ask questions, make demands and take control.

Since 1974, Hospice has been available for persons who have a terminal diagnosis of less than one year. Hospice provides comfort/palliative care, not curative medications. The person must be “housebound” while nurses, along with the patient and family, decide what measures can be taken to provide the doctor-prescribed comfort. Sometimes palliative sedation can be prescribed with the intent of inducing unconsciousness in order to reduce suffering. That decision is legal and varies among medical institutions and medical practices. The suffering as a result of a terminal illness can be both physically and mentally unbearable. Plans can be made through living wills (advanced directives) and Do Not Resuscitate (DNR) orders. However, experience demonstrates that those plans are easily ignored and are often surrounded by indecision and complicated care. Having a strong advocate available and knowledgeable of a person’s wishes is paramount.

In Oregon, Medical Aid in Dying permits a doctor to prescribe a terminal medication that must be self administered by the person. Multiple safeguards are contained in the law including time frames, witnessed written requests, two physicians and a 6-month diagnosed terminal disease.

Why not offer such an option for terminal patients who have maintained their mental competencies here in New Mexico? A 2014 study taken in our state revealed support for “death with dignity” between 58% and 69% depending on one’s age. The continued controversy and the historically minimal use of this option in those seven states where it is legal demonstrate that it is not for everyone. However, can we now draw on our compassion and concern to offer some choice and control to those we love by respecting the person’s decision to gather family and friends, create their own dignity in dying, and leave this world aware and in peace by supporting the End of Life Options Act?

Let’s put ourselves in the Top Ten!

For more information on end of life options see the following resources:

Compassion & Choices 

Death with Dignity National Center 

To contact the Silver City End of Life Options Coalition or leave comments: sceolocoalition@innerconnections.us