[T]he Art of Natural Death Care raises awareness of an alternative way in which families can care for their loved ones at the time of death. The Sophia Center for Life Studies Crossings Care Community, along with many forward thinking people around the country, are bringing death care back to family and community. Natural home death care is legal, even without a funeral director in most states, and is an alternative to the conventional way in which death has been handled in the United States over the last century. This growing movement of home funeral and green burial care is driven by the belief that this way can be more meaningful, affordable, and environmentally friendly. Families can care for their loved ones at the time of death bringing individuality, sacredness, love and reverence. The Art of Natural Death Care can help get the conversation started about end of life choices.
The Sophia Center for Life Studies would like to thank filmmaker Katelyn LaGrega for donating her time and energy and dedicating her heart and soul in creating this film. We believe that this film can serve individuals and organizations across the country who are dedicated to educating about Natural Death Care options. We are passionate about this work and encourage the use and sharing of this film to support this movement and raise awareness. Donations for the creation and production of this film can be made HERE!
[M]irrors reflect the truth of what strikes their surface. The eyes of a dying patient are the clearest mirrors I have ever known. In their gaze, there is simply no place to hide. Over the years, the habits of my life have been reflected in those eyes.
Once while washing the back of a hospice patient named Joe he turned toward me and said, “I never thought it would be like this.” I asked what he had thought it might be like. He answered, “I guess I never really thought about it.” Death had taken him by surprise. Perhaps we are not so different.
In the sacred, Hindu epic poem the Mahabharata there is a question that speaks to this tendency. “In all of the worlds what is most wondrous?” The answer that is given is; “That no man no woman though they see people dying all around them believes it will happen to them.”
We make an enormous effort to keep death at arms-length. We spend more than 50% of our healthcare dollars in the final six months of life, literally throwing money at death. We shut away our elders in nursing homes to avoid confronting their pain and our destiny. We have a multi-billion-dollar cosmetics industry that tries to keep us all looking young. We even put rouge on people in the coffin.
Death is the fulcrum issue of our life and yet we can barely use the word. People don’t die they “pass away” or they “expire” like credit cards. We make plans for all sorts of activities; when to get married, the number of children we will have, where to go on vacation, which career moves to make or how we will spend our retirement—all of which may never happen. But death, the one event that is certain to occur, barely receives a sidelong glance.
Dying is at its heart a sacred act; it is itself a time, a space, and process of surrender and transformation. The sacred is not separate or different from all things, but rather hidden in all things. Dying is an opportunity to uncover what is hidden.
Walking the gauntlet of thirty beds on the long single hospice ward at Laguna Honda Hospital, I noticed Isaiah out of the corner of my eye. An African-American man raised in Mississippi, Isaiah was actively dying. His breathing was labored, and he was sweating up a storm. I sat down next to him.
“You look like you’re working really hard,” I said.
Isaiah raised his arm, pointed to the distance, and said, “Just gotta get there.”
“I forgot my glasses. I can’t see that far in the distance. Tell me what you see.”
Isaiah described a bright green pasture and a long hill leading to a grassy plateau.
I asked, “If I promise to keep up, can I come?”
He grabbed my hand tight, and Isaiah and I started climbing together. His breathing got shorter, and he perspired more with every step. It was a long walk. Not an easy one.
“What else do you see?” I asked.
He described a one-room red schoolhouse with three steps leading up to a door.
My training informed me that Isaiah was disoriented to time and location. I could have told the old man that his visions were likely being caused by brain metastasis and morphine. I could have reminded him that we were in a ward at Laguna Honda Hospital. But that was only true on the most superficial level.
The deeper truth was that we were walking to a little red schoolhouse.
I asked, “Do you want to go in?”
Isaiah sighed. “Yeah. I’ve been waitin’.”
“Can I go with you?” I asked.
“Nope.”
“Okay, then, you go,” I said.
A few minutes later, Isaiah died quite peacefully.
The great spiritual and religious traditions have any number of names for the unnamable: the Absolute, God, Buddha Nature, True Self. All these names are too small. In fact, all names are too small. They are fingers pointing at the moon. I invite you to connect with what you know and trust most in your heart of hearts.
I use the simple term Being to point at that which is deeper and more expansive than our personalities. At the heart of all spiritual teachings is the understanding that this Being is our most fundamental and benevolent nature. Our normal sense of self, our usual way of experiencing life, is learned. The conditioning that occurs as we grow and develop can obscure our innate goodness.
Some part of us, deep in our hearts has known this truth. If not, we would not long for a return to it. And this part of our being knows that we will never be satisfied until our whole being is immersed in this oneness.
Making death masks of notorious criminals was common in the 19th century, such as this cast of murderer William Burke at the University of Edinburgh’s Anatomy Museum.
[T]hese days many people know they are dying long before death finally arrives. Yet death, a natural event, is often seen as a failure of medicine. Despite the additional time modern healthcare may provide us, we still begin our conversations about the wishes of the dying and their families too late – or not at all. This reluctance to accept our own mortality does not serve us well.
This taboo around death is a fairly modern, Western phenomenon. Past and present, societies have dealt with death and dying in diverse ways. It is clear from, for example, the outpouring of grief at Princess Diana’s death, and the conversations opening up around the 20th anniversary of the event, that these outlets are needed in our society too. High-profile celebrity deaths serve as sporadic catalysts for conversations that should be happening every day, in everyday lives.
Recent bereavement theory has moved on from thinking of grief as a series of stages, to a continuous process in which the bereaved never fully return to some “pre-bereaved” status quo. It is increasingly recognised that the living form various sorts of continuing bonds with the dead, as put forward by the sociologist Tony Walter and psychologist Dennis Klass and colleagues – and this is certainly something that can be seen in death practices today across the globe, and among those practised in the past.
In Neolithic Turkey, one funerary rite included the creation of plastered skulls – family members were buried under the floors of their house and after some time the skull was removed and a plaster face lovingly recreated over it. Many of these plastered skulls show evidence of wear and tear, breakage and repair, suggesting that they were used in everyday life, perhaps displayed and passed around among the living. Similarly, in modern-day Indonesia, the dead are kept in houses, fed and brought gifts for many years after death. While in this state they are considered to be ill or asleep – in this case their biological death does not entail social death.
It was not so long ago in the UK that public outpouring of grief and practices that kept the dead close were acceptable. For example, in Victorian England, mourning clothes and jewellery were commonplace – Queen Victoria wore black for decades in mourning for Prince Albert – while keeping tokens such as locks of hair of a deceased loved one were popular.
However, today death has been outsourced to professionals and, for the most part, dying happens in hospitals or hospices. But many doctors and nurses themselves feel uncomfortable with broaching the subject with relatives. Perhaps there are lessons to be drawn from the attitudes of others far removed from us in time and space: the past, and societies on the other side of the globe, are easier to discuss, yet act as prompts to help us discuss more personal experiences.
The Continuing Bonds Project brings together healthcare practitioners and archaeologists at the University of Bradford and LOROS Hospice in Leicester to explore what we can learn from the past, using archaeology to challenge modern perceptions of and attitudes towards death and dying, and as a vehicle through which people can discuss their own mortality and end-of-life care.
Hungary which has been on display since 1038. Though saints’ relics – generally body parts – have been a large part of Christian culture in the past and were not uncommon, they are something many are uncomfortable with today. One workshop participant describes the display of St Stephen’s hand as “selfish”, as if he is being exploited beyond the grave. What responsibilities do we have towards the dead? What constitutes “respect” for them? Archaeology shows us that it is a fluid and culturally embedded concept which differs wildly between societies and individuals.
Memorialisation, through photographs or statues (that served the same purpose in the past), appears to be fundamental to “respectful” treatment of the dead. Death masks – plaster castings of a dead person’s face – and later even photos of the recently departed, were not uncommon as a way to memorialise the dead, even into the 20th century. Yet while taking photographs of the departed in life are celebrated, photographs of dead bodies themselves are less palatable today.
The vast stone bust of Ramses II in the British Museum.
Another example for workshop participants is the statue of the Egyptian pharaoh Ramesses II, the bust of which
resides at the British Museum, while the feet remain in situ at the Ramesseum in Luxor, Egypt. Given that this individual lived in Egypt nearly 3,000 years ago, the statue has kept his memory alive. Yet its fragmented and dispersed nature prompted our participants to wonder how long their loved ones’ memories of them would persist after their death, and what legacies they would want to leave.
101 uses for mortal remains
Memorialisation of the dead takes a very different form at the 16th-century Capela dos Ossos in Évora, Portugal, where monks desiring to save the souls of some 5,000 people from overcrowded local cemeteries used their remains to create a chapel of bones. Individual bones were used to create decorative features such as arches and vaulted ceilings.
Workshop participants were unhappy that bones had been removed from their resting place without the permission of the deceased. But for how long can our wishes be accommodated after death? The other feature that unsettled them was the dismantling of the skeletons – in the West today, our identity sits firmly with us as individuals, bounded by our physical bodies. Fragmenting our skeletal remains strikes firmly at this sense of identity – and so our sense of social presence. Such scattered remains are nameless, faceless – lacking the very thing that memorials seek to preserve.
In other cultures – and in the past – identity is less individualistic and resonates within larger kin or community groups. Here, distributing bones may be less problematic and a part of the process whereby the recently deceased joins the host of communal ancestors.
‘Nice chapel, I love what you’ve done with the space.’
Though some of the topics were difficult to discuss, many workshop participants felt they had improved confidence in talking about death, dying and bereavement as a result. The range of practices from the past reminds us of the diverse ways through which death can be negotiated and the extent to which practices that we take for granted today are in fact culturally embedded, relative and subject to change. Persistent Facebook profiles of dead friends and family to which loved ones post on each anniversary are an example of how traditions are changing.
In a world where death has become increasingly outsourced and medicalised, the diverse ways we treated and remembered our dead in the past should highlight the choices available to us and prompt us to consider those now banned or taboo. At the entrance of the Capela dos Ossos, the monks who built the chapel left an inscription, a momento mori that reminds us: “We bones that are here, for yours await”.
Death is often a taboo subject, so when death anxiety comes into play, it is hard to know how to face it.
By Maria Cohut
[D]eath is something that we all, sooner or later, have to face. But how do we respond to it? Why are some of us more afraid than others? And what is it, exactly, that scares us about death? We offer an overview of theories related to death anxiety, and what you can do to address it.
To a greater or lesser extent, it is likely that we are all scared of death – whether it be the thought of our own cessation or the fear that someone we love might pass away. The thought of death is not a pleasant one, and many of us avoid such morbid musings, naturally choosing to focus on what life has to offer, as well as on our own wishes and goals, instead.
Yet, as Benjamin Franklin once famously wrote, “In this world nothing can be said to be certain, except death and taxes,” so it is no surprise that death-related worries sometimes take us by storm.
Fear of death is sometimes referred to as “thanatophobia,” deriving from the Ancient Greek words “Thanatos,” the name of the god of death, and “phobos,” meaning “fear.”
Notably, thanatophobia – which is called “death anxiety” in a clinical context – is not listed as a disorder in its own right in the Diagnostic and Statistical Manual of Mental Disorders. Still, this rarely spoken-about anxiety has the potential to seriously affect people’s lifestyles and emotional health.
Thanatophobia: Natural or trauma-driven?
Thanatophobia was first tackled by Sigmund Freud, who did not consider it to be fear of death, as such. Freud thought that we cannot truly believe in death as a real occurrence, so any death-related fears must stem from unaddressed childhood trauma.
But it was the theory put forth a little later by an anthropologist called Ernst Becker that ended up informing most current understandings of death anxiety and its causes. Becker believed that death anxiety comes naturally to all people who find the thought of death and dying unacceptable.
That is why, he argued, everything everyone does – the goals we set, our passions and hobbies, and the activities we engage in – is, in essence, a coping strategy, and that these are things we focus on so we that need not worry about our eventual death.
Becker’s work gave rise to “terror management theory” (TMT), which posits that humans must constantly deal with an internal conflict: the basic desire to live against the certainty of death. TMT emphasizes individuals’ self-consciousness and their drive to achieve personal goals, motivated by the awareness of mortality.
Also, according to TMT, self-esteem is key for the degree to which individuals experience death anxiety. People with high self-esteem are better at managing fear of death, while people with low self-esteem are more easily intimidated by death-related situations.
Some newer approaches suggest a “middle way” between TMT and another theory referred to as “separation theory,” which highlights the importance of early trauma, reinforced by an awareness of mortality later in life.
Another recent approach to understanding and explaining death anxiety is that of “post-traumatic growth theory” (PTG). According to PTG, going through a distressing event – such as the death of a loved one or receiving a worrying health diagnosis – can actually have a positive effect, causing individuals to appreciate the small things in life a lot more, or to become more goal-oriented.
Death anxiety as a disorder
Although it is likely that we will all be worried about death or a death-related situation at some time in our lives, death anxiety is only pathological when it reaches extreme levels, disrupting the normal lifestyle of an individual.
One account of death anxiety – as reported by a man’s worried wife – emphasizes how this kind of fear can become obsessive and get out of control.
“The fear is specifically of death (not pain or dying as such) and the emptiness of it (he’s not religious) and the fact that he will no longer be here. […] this is an irrational, emotional fear that he has trouble controlling. Recently it has got worse – he’s not sure why – but it has made him feel panicky and the thoughts have been straying into the daytime.”
Who is afraid of death?
Dr. Robert Kastenbaum has reviewed various psychology theories and studies related to the concept of death, outlining which populations are most likely to express a persistent fear of death. Drs. Patricia Furer and John Walker summarize the findings in an article published in the Journal of Cognitive Psychotherapy.
Women are more likely than men to experience death anxiety, and this tends to peak twice: once in their 20s and again in their 50s.
The majority of individuals are afraid of death. Most people tend to fear death, but they usually only exhibit low to moderate levels of anxiety.
Women tend to be more afraid of death than men. Additionally, a newer study has found that while death anxiety seems to surface in both women and men during their 20s, women also experience a second surge of thanatophobia when they reach their 50s.
Young people are just as likely to experience death anxiety as elderly people.
There appears to be some correlation between a person’s educational and socioeconomic status and reduced death anxiety.
No association has been found between religious engagement and reduced death anxiety.
Other studies show that people exhibiting health anxiety, or hypochondriasis, are also affected by death anxiety, as it naturally correlates with an excessive worry about health.
[W]hen someone you love is hospitalized with a grave illness or injury, you may face decisions about their care.
Cardiopulmonary resuscitation (CPR), mechanical ventilation, tube feedings, surgery, chemotherapy or other interventions may add weeks, months or years to their life.
If your loved one has an advance directive (living will), it will spell out which interventions they want and don’t want. If they don’t have one and can’t speak for themselves, how should you proceed?
To help families learn to make good choices in this situation, Silvia Perez Protto, MD, Director of our Center for End of Life Care, answers key questions below.
Q: What’s the first thing families should consider?
A: First, determine whether the patient is capable of making a decision about treatment. If so, your best option is to explore their wishes and values:
What are they expecting and hoping from treatment?
What are the trade-offs of treating versus not treating?
What risks are acceptable and not acceptable to them?
Which do they value more: quality of life or quantity of days?
Depending on their age, situation and views, answers will vary.
One paralyzed patient may be happy sitting with family and watching TV. Another may not.
One patient may want doctors to extend her life despite pain, nausea, or loss of mobility to see her son graduate from college. Another may be unwilling to experience serious side effects from a treatment that isn’t 100 percent effective.
We want to honor the patient’s wishes. When patients can’t communicate and have no advance directive, we look to families for guidance.
Q: What’s the best way to start the conversation?
A: I encourage families to talk to loved ones about end-of-life wishes and values before they get sick or develop a serious condition. You won’t go wrong trying to explore someone’s wishes and values.
When I asked my own mother what she wanted at the end of her life, I learned she wanted to be around her five children, to be able to communicate with us and to be independent. This led me to understand that if she became terminally ill and couldn’t recognize us, she wouldn’t want to live like that.
Some people wouldn’t mind being on a feeding tube or a ventilator, unaware of their environment. Others wouldn’t want to live in a vegetative state.
These questions are tough and emotionally difficult to ask mom or dad. Even I got stuck talking to my mom. But we can always ask for help. A spiritual care advisor or palliative care doctor at your hospital can facilitate these discussions.
(And remember to tell loved ones about your wishes and values, too.)
Q: Do larger issues get in the way of these discussions?
A: I think not talking about death is cultural. It’s how we see life, it’s our spiritual background, it’s our own fear of dying.
I’ve heard patients say, “I feel like I’m dying, but my kids don’t want to talk about it.” This isolates them at the end of life. Pain and isolation or abandonment are our main fears when we’re dying.
But the more we talk, the less fear we’ll have. Everybody’s going to die. Avoiding the topic won’t decrease the chances of dying. As a society, we need to normalize death. Being born, growing up, having kids, dying – these are all part of the life cycle.
Q: What questions should you ask about end-of-life care?
A: If you’re worried how an illness may impact the end of your life, talk to your family doctor, primary care doctor or specialist. Ask, “What are the side effects, risks and benefits of the treatment you’ve recommended?” Once you have that information, see how it lines up with your wishes and values.
If you want your doctor to keep trying to treat the disease, we can provide palliative care along with the treatment, controlling your symptoms and minimizing your pain. If you choose to end treatment, it doesn’t mean we’re giving up. We’ll still provide palliative care right up until the end.
Our goal in the ICU is always to get patients better and back to a functional life at home. But that’s not always possible. We can aim either to extend life or to offer the best quality of life in the time the patient has left.
Q: Are there proven benefits to end-of-life planning?
A: Yes. Studies show that when advance care planning is done, the family’s experience and the patient’s experience are better. In the United States, autonomy is very important. Advance directives help you maintain your autonomy at the end of life.
Healthcare providers are encouraged to obtain advance directives and document patient’s wishes in their chart for all caregivers to see.
Q: Any final word for families?
A: I encourage families to see death as a natural act and to understand the value of a natural death. We can do many things to extend life, but sometimes the price we pay is having no quality of life.
[I]’ve been present with hundreds of people as they’ve died, hundreds more who were already dead by the time I was paged, and hundreds more who were in their dying process. I’ve accompanied spouses, parents, children, friends and family members as they’ve experienced the horror and sorrow of grief. For the past 20 years, I’ve been a chaplain, mostly in hospitals, a few with hospice. In doing this work, I’ve crossed death’s path more often than I can count as I’ve zigzagged my way through the hospital corridors and in the homes of folks experiencing the last days, weeks, months of life. Those of us on the interdisciplinary healthcare team struggle, as best we can, to provide our dying patients with a “good death,” however they and their families define such. There’s a saying in healthcare, “People die as they have lived.” Sometimes that is not the case, but, more often than not, that’s the way it goes.
Often, Quakerism is defined as a way of life. Some questions that I have carried for years in the ministry of chaplaincy include the following:
What does our Quaker faith and spirituality offer us as we face decline, diminishment, and death?
What can we say, as Quakers, with regard to dying and death as a personal and spiritual experience?
Is there a Quaker way of dying? How do we, as Quakers, do this?
My formative experience with regard to the Quaker way of dying was by accompanying a Friend through her decline and death. Her final illness, dying process, and death were Quaker community and meeting experiences. Her experience wasn’t a private or family-only affair. When she couldn’t come to meeting, small groups of Friends were dispatched to her home, hospital, or nursing facility to have meeting for worship with her. Friends from meeting stayed with her overnight in the hospital when she had to be on the breathing machine and was so uncomfortable and scared. She had a committee of trusted Friends who arranged for her practical needs when she was still able to live independently, including staying with her 24/7 when just home from the hospital and at times of extreme debility. These Friends helped with discernment regarding transition from independent living to a skilled nursing facility. In what turned out to be her final hospitalization, these Friends helped her discern her choice to decline heroic life-sustaining treatment and allow herself a natural death. Friends reflected with her about her desire for integrity and living in alignment with the testimonies, her beliefs about an afterlife. She was afforded the opportunity, though her Quaker way of living, to proceed to a Quaker way of dying. One First Day, as we knew death was approaching, our meeting of about 80 Friends decided to meet in a hospital conference room for worship. About halfway into the worship hour, a Friend came downstairs to announce our Friend’s death. It was a gathered meeting. Our Friend died the way she had lived.
Last year, desiring conversation on these questions, I facilitated an interest group I called “The Quaker Art of Dying” at the Pacific Northwest Quaker Women’s Theology Conference. The conference brings women together from the divergent Friends traditions in the Pacific Northwest, primarily from Canadian, North Pacific, and Northwest Yearly Meetings, as well as other independent meetings and churches, to articulate our faith and to learn from each other. The group was well attended and diverse. I presented three queries to the group for discussion. We broke into small groups each taking one of the queries, then reconvened into the large group to get the bigger picture.
What is a Quaker approach to declining health, dying, and death?
[F]riends reported their understanding that all life is sacred and Spirit informs all life. A Quaker approach would be a mindful, conscious, and prepared approach, with an excitement—or at least a willingness—to enter the mystery of death. It was agreed that a Quaker approach would involve less denial that someone is dying or that death is imminent. There is a value for listening, hearing one another’s experiences, and entering new situations with curiosity, not offering answers. Especially for Liberal Friends, but for some Evangelical Friends as well, there was less focus on an afterlife. A Quaker approach would be a well-ordered approach, with orderly records, legal documents, and final letters and lists of wishes. Friends agreed that cremation was customary and in alignment with Quaker values. The writing of a memorial minute was another Quaker tradition to document the passing of a Quaker life. As one Friend stated, “The Quaker approach is portable; you can take the heart of the Quaker way wherever it needs to go.”
How do our beliefs, testimonies, and values inform our approach to the end of life?
[F]riends agreed in their understandings that we have a direct connection with the Divine. Some Friends voiced a lack of fear about death. Others voiced fears about the decline of physical and cognitive abilities and the actual process of dying, such as the possibility of pain, loss of competence, being a curmudgeon, or depleting family resources. One Friend likened the burdens of dying to birthing: “Both are hard work.” Friends agreed that upholding the dying person in community benefits the community as well as dying person. Friends voiced an intention to allow support and presence of others as we approach the end of life, as well as taking all the alone time we need.
How can we prepare for death? Our own and that of our loved ones? A list emerged.
[W]e need to:
Pray.
Think about what we want.
Talk about what we want, even though it is difficult, especially with our children.
Talk about what others want.
Talk with our families about our wishes.
Pray some more.
Deal with unfinished business—either finishing it or leaving it unfinished, but dealing with it intentionally.
Educate ourselves about health decline and the dying process by reading books like Atul Gawande’s Being Mortal.
Talk with our spouses or significant others, about things we’ll need to know if they can’t tell us themselves for whatever reason.
Prepare for the process:
Who do we want involved? Who do we not want involved? Do we want a care committee or not?
How do we want our remains disposed? Do we prefer cremation or burial? If we want to be cremated, do we want our remains to be scattered, interred, or buried?
What do we want for a memorial or funeral?
Do we want an obituary; a eulogy? What would we want said in our memorial minute?
We need to help meetings and churches be prepared for the decline, debility and deaths of their members and attenders.
Keep praying.
This conversation continues. In a recent meeting of our Quaker women’s discussion group, I facilitated a robust discussion about a Quaker approach to end-of-life issues and posed similar queries to the group. Evangelical Friends spoke of the “continuum of life” that transcends death, the need for “being right with God,” and the peace that “being with Jesus” will bring. Liberal Friends spoke of “entering the mystery” and “going into the Light.” There seemed to be agreement and assurance that “all will be well” at the end of physical life. Some women focused on the need to enter this time of life with their “affairs in order.” Other women spoke of their experiences accompanying a dying person in their meeting or church or in their own families. All seemed to enjoy the discussion of “things we don’t usually get to talk about” and voiced an intention to encourage further discussion in our churches and meetings. Later this month, I will attend my own meeting’s retreat where the topic will be “Spirituality As We Age.” No doubt, we will be continuing the discussion of how we Quakers intend to die as we have lived.
[H]e was sick, but it wasn’t like he was going to die anytime soon. A year ago, my dog Sierra sustained a neurological insult that left him delirious, unable to walk straight and almost entirely blind and deaf. Still, he enjoyed our loving touch, snuggling against my thigh as I watched a movie or falling asleep in my arms while being held. I struggled with these thoughts as the vet pushed the pink, fluid-filled syringe into his vein. He collapsed into my arms and let out a groan, as he had many times before. But this time, he did not get up.
I said goodbye and left him to join my parents standing in the waiting room. My father looked up at me, “Is it done?” I nodded, and suddenly, we all broke into tears. We embraced each other and talked about what a good dog he was. We told each other it was the right thing to do, that it was time. But was it? Why now?
I couldn’t help but think we were being selfish. Objectively, nothing much had changed since his suspected stroke, albeit he was undoubtedly more of a burden. We were constantly cleaning up after him, redirecting him when he got caught in a corner and paying for vet visits and medications. But the bottom line was that he still found enjoyment in life. Was the choice to put him down for our wellbeing or for his?
Health professionals and loved ones struggle with these same questions when caring for those nearing the end of life. Sierra’s decline came at a poignant time, one in which many are fighting for the right to choose death in the face of terminal illness or suffering. Currently, five states allow those with a terminal illness and a prognosis of less than six months to end their life with the help of a physician, also known as “medical aid in dying.” Canada legalized physician-assisted death in 2016, joining a small number of countries that have laws enabling this practice.
The principle behind these laws is relatively simple. People want to die with dignity, and in the process of fighting for the right to do so, they’ve ironically improved end-of-life care. As a free nation that claims to be a leader in health care, why have we not adopted this practice? While poking fun at “the land of the free,” Jim Jeffries, an Australian comedian known for his outsider political commentary, pointed out that “assisted suicide for the sick … is the biggest freedom of them all.”
Opposition to physician-assisted death comes from both the public and from within the medical profession itself. Deeply rooted societal ideals, values and norms fuel the debate. From day one, physicians take an oath to “do no harm.” Common sense tells us that healthcare professionals are supposed to help heal the sick, not to “help” them die. Furthermore, for some patients, taking one’s life goes against their religious values and/or our fundamental values as human beings. Also, many families find that loved ones nearing the end of life are often incapable of making well informed decisions due to fear, depression or the effects of disease on their mind. And so we choose life, even when death seems so near.
Despite the moral controversy, attempts have been made at giving patients the right to take control of their own death in the United States. Numerous court cases have brought the legality of this practice into light culminating in the 2006 Supreme Court case Gonzales v. Oregon. Under this ruling, the federal government failed to prohibit physicians in Oregon from prescribing drugs to help patients die, opening the door for states to legalize medical aid in dying. Organizations such as the Death with Dignity National Center have taken it upon themselves to both educate the public on end-of-life options and to advocate for physician-assisted death. Even so, there has been little done to legalize this practice in federal law.
Lawmakers took a step in the right direction during discussions about health care reform and the implementation of the Affordable Care Act (ACA). The misleadingly-termed “death panels” were a way to incentivize physicians to have discussions about end-of-life care with their patients. Unfortunately, this section of the ACA was thrown out due to political controversy. Finally, in 2015, the Centers for Medicare and Medicaid services approved regulations that allow qualified healthcare professionals to be reimbursed for providing advance care planning to patients. Still, moral and legal barriers persist, preventing patients from making the decision that is right for them.
Looking back, I am grateful that Sierra left us when he did. Choosing to put him down was not easy, but afterwards, I came to an important realization. By choosing death at that moment, we determined when, where and how he died. We chose a period when our family was home together so that we could spend quality time with each other in his last moments. This pronounced the end of our living relationship, giving us a sense of completion. We made sure that he died with us, in a peaceful environment, around those he loved instead of alone on the kitchen floor. He was able to leave the world peacefully and quietly without the suffering of a drawn out painful death that would taint our memory of his long and happy life. Sometimes, I wonder if the groan he let out at the end was a sigh of relief, a goodbye or even a thank you.
