Dr Geoffrey Mitchell, Professor of General Practice and Palliative Care at the University of Queensland, recently wrote an article on the ‘very public’ debate relating to opioid use, and tension between standard end‐of‐life care and voluntary assisted dying, as a ‘perfect storm’ that is impacting GPs and other health professionals.
‘Some are choosing to abandon end-of-life care altogether rather than risk professional ruin should they persist in the use of any opioid therapy,’ Professor Mitchell said.
Professor Mitchell cited previous newsGP articles as evidence doctors are worried. He said he was motivated to write his article in order to help alleviate concerns and prevent a wave of GPs from leaving palliative care.
‘[GPs responding like this was] no surprise to me. I’m aware of the risk-averse nature of a lot of GPs and the fear of litigation is quite high with some of my colleagues,’ he told newsGP.
‘The fear is that the use of medicines to minimise suffering and distress at the very end of life may hasten death and be construed by critics as euthanasia by stealth.
‘The reality is that the person is dying. While treatments such as opioids may theoretically shorten life marginally, it is the disease that causes death, not the treatment.’
In a recent ABC interview, RACGP President Dr Harry Nespolon agreed with this position and reiterated that the college is alarmed about the impact increased scrutiny on opioid prescription is having on doctors providing palliative care.
‘Good palliative care does require the use of high-dose opioids, and that’s what patients deserve,’ he said.
‘They deserve a good death and a painless death. All this is doing is asking doctors to prescribe fewer opioids for patients who really should be getting them.’
According to Professor Mitchell, the increased emphasis on opioid diagnosis, combined with incomingvoluntary assisted dying laws, has emboldened critics of palliative care and led to misinformation that can actually harm patients.
‘If [terminally ill patients] need strong opioid medication and can’t get it because their doctor won’t prescribe it, well then that’s the other side of the coin – the person is going to be suffering unnecessarily in their final days and hours, and that is unacceptable,’ he said.
‘Critics of palliative care think it’s quite often assisted dying under a legal guise, which is not true.
‘It’s just wrong, but it’s out there and so people who might not be feeling particularly confident about what they’re doing will say, “Well, I don’t want a bar of it”.’
However, despite the current climate of fear, Professor Mitchell believes a study he co-authored last year should go some way towards alleviating litigation concerns and help ensure patients receive proper medical care.
‘Of all case law online and all tribunals, all settings, we found 12 cases. Of those, only two had adverse findings recorded, and neither led to criminal proceedings,’ he said.
‘What that says is that if your case is looked at, if you’ve shown due care and attention, the likelihood of getting into trouble is negligible.
‘Many of the cases were … findings which were more to do with system issues, rather than personal issues.
‘Things go wrong, obviously, and they have to be looked at, but because people by and large know how to use opioids or are cautious about their use, when things go wrong it’s usually not the person, it’s something else.’
It may be one of the hardest things we’ll go through in our lives, but how can grief help us find empowerment and strength even when it seems impossible?
Grief is one of the most universal experiences that we can go through as human beings. Regardless of how each of us learns to cope with the loss of a loved one, one thing is certain – the way we reflect on loss can teach us valuable lessons that we carry with us for the rest of our lives.
Though it may seem impossible in the early stages of grief, finding empowerment in times of tragedy can be an invaluable tool in the healing process. Even if death has no religious or spiritual connotations for you, it is still possible to transform these emotions into a sense of serenity, whether it takes weeks, months or even years.
Learning Compassion
While your circumstances may vary, the likelihood is that loss, grief and even organising a funeral will come with a great deal of pain. When we experience emotional turmoil or suffering in our lives, we often turn to those around us for help and support. However, when someone dies, it is likely that you will not be the only one experiencing this loss and pain, and will spend time in a period of shared grieving.
In the early stages of grief – particularly in the days leading up to and following a funeral – emotions can run high, and everyone around you will be dealing with their grief in their own personal way. While it may be extremely difficult, taking heart in your shared memories, and the impact that person had on your lives can foster a sense of compassion for your friends and family, as you help one another to find strength and peace.
It’s common for this period of shared grieving to help strengthen these relationships, as you learn to support and share with one another.
But grief doesn’t just teach us to feel compassion for others. In order to feel empowered and at peace, it is important that we learn to feel just as much compassion for ourselves. Grieving can be difficult if you are the family member in charge of organising a funeral, or if you have other responsibilities in your life.
Instead of ‘staying strong’ and bottling up these feelings, giving yourself the space to grieve can help you to put those responsibilities in perspective. Grieving teaches us both the fragility and the value of life, and encourages us to be kinder to ourselves and at peace with our own feelings – something that will invaluable as you move on with the rest of your life.
Living Each Day
However old you are, the death of a loved one has a way of putting things in perspective, and making us re-evaluate our priorities. In an ideal world, of course, it shouldn’t take a bereavement for us to live our lives to the fullest. Unfortunately, many of us are living increasingly busy, hectic and stressful lifestyles that leave very little time for self-reflection. Sometimes changing our lifestyles is just too scary until we have the impetus to do so.
When someone passes, it can be a harsh reminder of the time we’ve spent so far, and the time we have left to pursue our goals. When a loved one dies suddenly or unexpectedly, this awakening can be even more painful and jarring.
In certain situations, especially for families that have lost a loved one to a long, terminal illness, it could be their own encouragement that forces you to break those negative habits. For some, witnessing the way in which their loved one embraces all that life has to offer towards the end of their own life can be an inspirational experience, and a shining example to follow.
Whatever the reason, it is perfectly normal to feel the sense that “life’s too short” after losing someone you love, and it’s fine to acknowledge the value in this. As long as it does not lead to destructive behaviour for you or your family, this attitude can often lead to a happier and healthier future.
Remembering the Past, Looking to the Future
Grief can help you look to the future in more ways than one – and this doesn’t always mean taking a spontaneous round-the-world trip. The early stages of grief are hard, and it’s understandable for moving on to feel disrespectful or even impossible, almost as though you are dishonouring their memory.
As painful as it may be, however, grief has a way of reminding us that life goes on even after people pass. The only way to create experiences and memories for future generations is to carry on living after they are no longer with us, and live in the manner that they would like to have seen.
For some people, reminiscing about the past while trying to move on into the future is the hardest part of the grieving process. You may fall on either side of the spectrum when it comes to navigating this process: some choose to close themselves off from any and all memories, and will not even speak of their loved one; others will fill their home with photographs and sentimental items, and seek to remember the good times they spent together.
We all grieve differently, and there is no correct way in which to deal with this, or any part of the grieving process. If you are weighed down by memories, however, then incorporating the positive and happy memories while still living your own life can be a positive way of learning how to move on.
Remembering the lives that our loved ones have lived can also empower and encourage us, helping us to learn from their own experiences, achievements and mistakes. Learning from those that have passed even after they are gone reminds us that they can still live on in our memories, affecting our choices and the generations to come.
Learning to be Grateful
Well-wishing friends may have approached you with cliches such as “Better to have loved and lost than never to have loved at all”, and they can easily seem tired and trite. But for some, this precise mentality be a real help when learning to deal with the loss of someone close.
At first, the feeling of love can seem like an unnecessary burden – after all, it is because we love that we feel pain when someone is no longer with us. However, the gratitude that comes to many of us after the passing of a loved one is a very special gift, and is one of the most powerful grieving tools available to us. Though it may be an unwanted gift, especially at first, it is a gift nonetheless.
There are, after all, plenty of people in the world who do not have these familial bonds, or anyone close or dear to them. While the grieving process is so much harder when it is for a person that was dearly loved, it can remind us of how lucky we are to have people in our lives that we wish we hadn’t lost.
This outlook may not come readily when you are first grieving; it may take time, practice, and further loss. When we arrive at it, however, it can change the feeling of grief from a negative and crippling experience to something more positive and hopeful – a chance to cherish the bonds that tie us together.
The death of someone can be a tremendous lesson in what it actually means to live. It offers us a period of reflection that we don’t always have the ability to tap into in our daily grind, and a chance to treasure what we have as much as what we’ve lost. It may not happen overnight, but it is possible that your final stage of grief will change too – transcending acceptance to reach a point of genuine healing.
One of the great Jewish spiritual teachers of the 20th century, Rabbi Abraham Joshua Heschel argues that facing death gives life meaning; that life and death are both part of a greater mystery; that by virtue of being created in no less than God’s image, we can imagine an afterlife for humanity — yet at the same time death itself is an antidote to human arrogance; and that in death we pay gratitude for the wonder and gift of our existence.
Death as a Way to Understand the Meaning of Life
Our first question is to what end and upon what right do we think about the strange and totally inaccessible subject of death? The answer is because of the supreme certainty we have about the existence of man: that it cannot endure without a sense of meaning. But existence embraces both life and death, and in a way death is the test of the meaning of life. If death is devoid of meaning, then life is absurd. Life’s ultimate meaning remains obscure unless it is reflected upon in the face of death.
The fact of dying must be a major factor in our understanding of living. Yet only few of us have come face to face with death as a problem or a challenge. There is a slowness, a delay, a neglect on our part to think about it. For the subject is not exciting, but rather strange and shocking.
What characterizes modern man’s attitude toward death is escapism, disregard of its harsh reality, even a tendency to obliterate grief. He is entering, however, a new age of search for meaning of existence, and all cardinal issues will have to be faced.
Life as a Way to Understand the Meaning of Death
Death is grim, harsh, cruel, a source of infinite grief. Our first reaction is consternation. We are stunned and distraught. Slowly, our sense of dismay is followed by a sense of mystery. Suddenly, a whole life has veiled itself in secrecy. Our speech stops, our understanding fails. In the presence of death there is only silence, and a sense of awe.
Is death nothing but an obliteration, an absolute negation? The view of death is affected by our understanding of life. If life is sensed as a surprise, as a gift, defying explanation, then death ceases to be a radical, absolute negation of what life stands for. For both life and death are aspects of a greater mystery, the mystery of being, the mystery of creation. Over and above the preciousness of particular existence stands the marvel of its being related to the infinite mystery of being or creation.
Death, then, is not simply man’s coming to an end. It is also entering a beginning.
Our Greatness: The Question of an Afterlife and the “Image of God”
There is, furthermore, the mystery of my personal existence. The problem of how and whether I am going to be after I die is profoundly related to the problem of who and how I was before I was born. The mystery of an afterlife is related to the mystery of preexistence. A soul does not grow out of nothing. Does it, then, perish and dissolve in nothing?
Human life is on its way from a great distance; it has gone through ages of experience, of growing, suffering, insight, action. We are what we are by what we come from. There is a vast continuum preceding individual existence, and it is a legitimate surmise to assume that there is a continuum following individual existence. Human living is always being under way, and death is not the final destination.
In the language of the Bible to die, to be buried, is said to be “gathered to his people” (Genesis 25:8). They “were gathered to their fathers” (Judges 2:10). “When your days are fulfilled to go to be with your fathers” (I Chronicles 17:11).
Do souls become dust? Does spirit turn to ashes? How can souls, capable of creating immortal words, immortal works of thought and art, be completely dissolved, vanish forever?
Others may counter: The belief that man may have a share in eternal life is not only beyond proof; it is even presumptuous. Who could seriously maintain that members of the human species, a class of mammals, will attain eternity? What image of humanity is presupposed by the belief in immortality? Indeed, man’s hope for eternal life presupposes that there is something about man that is worthy of eternity, that has some affinity to what is divine, that is made in the likeness of the divine…
[T]he likeness of God means the likeness of Him who is unlike man. The likeness of God means the likeness of Him compared with whom all else is like nothing.
Indeed, the words “image and likeness of God” [in the biblical creation story] conceal more than they reveal. They signify something which we can neither comprehend nor verify. For what is our image? What is our likeness? Is there anything about man that may be compared with God? Our eyes do not see it; our minds cannot grasp it. Taken literally, these words are absurd, if not blasphemous. And still they hold the most important truth about the meaning of man.
Obscure as the meaning of these terms is, they undoubtedly denote something unearthly, something that belongs to the sphere of God. Demut [likeness]and tzelem [image]are of a higher sort of being than the things created in the six days. This, it seems, is what the verse intends to convey: Man partakes of an unearthly divine sort of being.
Our Smallness: Death Teaches Humility
Death is the radical refutation of man’s power and a stark reminder of the necessity to relate to a meaning which lies beyond the dimension of human time. Humanity without death would be arrogance without end. Nobility has its root in humanity, and humanity derived much of its power from the thought of death.
Death refutes the deification and distorts the arrogance of man.
He is God; what he does is right, for all his ways are just; God of faithfulness and without wrong, just and right is he.
Just art thou, O Lord, in causing death and life; thou in whose hand all living beings and kept, far be it from thee to blot out our remembrance; let thy eyes be open to us in mercy; for thine, O Lord, is mercy and forgiveness.
We know, O Lord, that thy judgment is just; thou art right when thou speakest, and justified when thou givest sentence; one must not find fault with thy manner of judging. Thou art righteous, O Lord, and thy judgment is right.
True and righteous judge, blessed art thou, all whose judgments are righteous and true.
The Lord gave and the Lord has taken away; blessed be the name of the Lord.
— Daily Prayer Book, from the Burial Service
Death as Gratitude for Existence
If life is a pilgrimage, death is an arrival, a celebration. The last word should be neither craving nor bitterness, but peace, gratitude.
We have been given so much. Why is the outcome of our lives, the sum of our achievements, so little?
Our embarrassment is like an abyss. Whatever we give away is so much less than what we receive. Perhaps this is the meaning of dying: to give one’s whole self away.
Death is not seen as mere ruin and disaster. It is felt to be a loss of further possibilities to experience and to enhance the glory and goodness of God here and now. It is not a liquidation but a summation, the end of a prelude to a symphony of which we only have a vague inkling of hope. The prelude is infinitely rich in possibilities of either enhancing or frustrating God’s patient, ongoing efforts to redeem the world.
Death is the end of what we can do in being partners to redemption. The life that follows must be earned while we are here. It does not come out of nothing; it is an ingathering, the harvest of eternal moments achieved while on earth.
Unless we cultivate sensitivity to the glory while here, unless we learn how to experience a foretaste of heaven while on earth, what can there be in store for us in life to come? The seed of life eternal is planted within us here and now. But a seed is wasted when placed on stone, into souls that die while the body is still alive.
The greatest problem is not how to continue but how to exalt our existence. The cry for a life beyond the grave is presumptuous, if there is no cry for eternal life prior to our descending to the grave. Eternity is not perpetual future but perpetual presence. He has planted in us the seed of eternal life. The world to come is not only a hereafter but also a herenow.
Our greatest problem is not how to continue but how to return. “How can I repay unto the Lord all his bountiful dealings with m?” (Psalms 116:12). When life is an answer, death is a homecoming. “Precious in the sight of the Lord is the death of his saints” (Psalms 116:14). For our greatest problem is but a resonance of God’s concern: How can I repay unto man all his bountiful dealings with me? “For the mercy of God endureth forever.”
This is the meaning of existence: to reconcile liberty with service, the passing with the lasting, to weave the threads of temporality into the fabric of eternity.
The deepest wisdom man can attain is to know that his destiny is to aid, to serve. We have to conquer in order to succumb; we have to acquire in order to give away; we have to triumph in order to be overwhelmed. Man has to understand in order to believe, to know in order to accept. The aspiration is to obtain; the perfection is to dispense. This is the meaning of death: the ultimate self-dedication to the divine. Death so understood will not be distorted by the craving for immortality, for this act of giving away is reciprocity on man’s part for God’s gift of life. For the pious man it is a privilege to die.
Ten residents slipped away from their retirement community one Sunday afternoon for a covert meeting in a grocery store cafe. They aimed to answer a taboo question: When they feel they have lived long enough, how can they carry out their own swift and peaceful death?
The seniors, who live in independent apartments at a high-end senior community near Philadelphia, showed no obvious signs of depression. They’re in their 70s and 80s and say they don’t intend to end their lives soon. But they say they want the option to take “preemptive action” before their health declines in their later years, particularly because of dementia.
More seniors are weighing the possibility of suicide, experts say, as the baby boomer generation — known for valuing autonomy and self-determination — reaches older age at a time when modern medicine can keep human bodies alive far longer than ever.
The group gathered a few months ago to meet with Dena Davis, a bioethics professor at Lehigh University who defends “rational suicide” — the idea that suicide can be a well-reasoned decision, not a result of emotional or psychological problems. Davis, 72, has been vocal about her desire to end her life rather than experience a slow decline because of dementia, as her mother did.
he concept of rational suicide is highly controversial; it runs counter to many societal norms, religious and moral convictions, and the efforts of suicide prevention workers who contend that every life is worth saving.
“The concern that I have at a social level is if we all agree that killing yourself is an acceptable, appropriate way to go, then there becomes a social norm around that, and it becomes easier to do, more common,” said Yeates Conwell, a psychiatrist specializing in geriatrics at the University of Rochester and a leading expert in elderly suicide. That’s particularly dangerous with older adults because of widespread ageist attitudes, he said.
As a society, we have a responsibility to care for people as they age, Conwell argued. Promoting rational suicide “creates the risk of a sense of obligation for older people to use that method rather than advocate for better care that addresses their concerns in other ways.”
A Kaiser Health News investigation in April found that older Americans — a few hundred per year, at least — are killing themselves while living in or transitioning to long-term care. Many cases KHN reviewed involved depression or mental illness. What’s not clear is how many of these suicides involve clear-minded people exercising what Davis would call a rational choice.
Suicide prevention experts contend that while it’s normal to think about death as we age, suicidal ideation is a sign that people need help. They argue that all suicides should be avoided by addressing mental health and helping seniors live a rich and fulfilling life.
But to Lois, the 86-year-old woman who organized the meeting outside Philadelphia, suicides by older Americans are not all tragedies. A widow with no children, Lois said she would rather end her own life than deteriorate slowly over seven years, as her mother did after she broke a hip at age 90. (Lois asked to be referred to by only her middle name so she would not be identified, given the sensitive topic.) In eight years living at her retirement community, Lois has encountered other residents who feel similarly about suicide. But because of stigma, she said, the conversations are usually kept quiet.
Lois insisted her group meet off-campus at Wegmans because of the “subversive” nature of the discussion. Supporting rational suicide, she said, clashes with the ethos of their continuing care retirement community, where seniors transition from independent apartments to assisted living to a nursing home as they age.
Seniors pay six figures to move into the bucolic campus, which includes an indoor heated pool, a concert hall and many acres of wooded trails. They are guaranteed housing, medical care, companionship and comfort for the rest of their lives.
“ We are saying, thank you very much, but that’s not what we’re looking for,” Lois said of her group.
Carolyn, a 72-year-old member of the group who also asked that her last name be withheld, said they live in a “fabulous place” where residents enjoy “a lot of agency.” But she and her 88-year-old husband also want the freedom to determine how they die.
A retired nurse, Carolyn said her views have been shaped in part by her experience with the HIV/AIDS epidemic. In the 1990s, she created a program that sent hospice volunteers to work with people dying of AIDS, which at the time was a death sentence.
She said many of the men kept a stockpile of lethal drugs on a dresser or bedside table. They would tell her, “When I’m ready, that’s what I’m going to do.” But as their condition grew worse, she said, they became too confused to follow through.
“I just saw so many people who were planning to have that quiet, peaceful ending when it came, and it just never came. The pills just got scattered. They lost the moment” when they had the wherewithal to end their own lives, she said.
Carolyn emphasized that she and her husband do not feel suicidal, nor do they have a specific plan to die on a certain date. But she said while she still has the ability, she wants to procure a lethal medication that would offer the option for a peaceful end in the future.
“Ideally, I would have in hand the pill, or the liquid or the injection,” she said.
New Jersey recently became the eighth state to allow medical aid in dying, which permits some patients to get a doctor’s prescription for lethal drugs. That method is restricted, however, to people with a terminal condition who are mentally competent and expected to die within six months
Patients who aren’t eligible for those laws would have to go to an “underground practice” to get lethal medication, said Timothy Quill, a palliative care physician at the University of Rochester School of Medicine. Quill became famous in the 1990s for publicly admitting that he gave a 45-year-old patient with leukemia sleeping pills so she could end her life. He said he has done so with only one other patient.
Quill said he considers suicide one option he may choose as he ages: “I would probably be a classic [case] — I’m used to being in charge of my life.” He said he might be able to adapt to a situation in which he became entirely dependent on the care of others, “but I’d like to be able to make that be a choice as opposed to a necessity.”
Suicide could be as rational a choice as a patient’s decision to end dialysis, after which they typically die within two weeks, he said. But when patients bring up suicide, he said, it should launch a serious conversation about what would make their life feel meaningful and their preferences for medical care at the end of life.
Clinicians have little training on how to handle conversations about rational suicide, said Meera Balasubramaniam, a geriatric psychiatrist at New York University School of Medicine who has written about the topic. She said her views are “evolving” on whether suicide by older adults who are not terminally ill can be a rational choice.
“One school of thought is that even mentioning the idea that this could be rational is an ageist concept,” she said. “It’s an important point to consider. But ignoring it and not talking about it also does not do our patients a favor, who are already talking about this or discussing this among themselves.”
In her discussions with patients, she said, she explores their fears about aging and dying and tries to offer hope and affirm the value of their life.
Conwell, the suicide prevention expert, said these conversations matter because “the balance between the wish to die and the wish to live is a dynamic one that shifts frequently, moment to moment, week to week.”
Carolyn, who has three children and four grandchildren, said conversations about suicide are often kept quiet for fear that involving a family member would implicate them in a crime. The seniors also don’t want to get their retirement community in trouble.
In some of the cases KHN reviewed, nursing homes have faced federal fines of up to tens of thousands of dollars for failing to prevent suicides on-site.
There’s “also just this hush-hush atmosphere of our culture,” Carolyn said. “Not wanting to deal with judgment — of others, or offend someone because they have different beliefs. It makes it hard to have open conversations.”
Carolyn said when she and her neighbors met at the cafe, she felt comforted by breaking the taboo.
“The most wonderful thing about it was being around a table with people that I knew where we could talk about it, and realize that we’re not alone,” Carolyn said. “To share our fears — like if we choose to use something, and it doesn’t quite do the job, and you’re comatose or impaired.”
At the meeting, many questions were practical, Lois said.
“We only get one crack at it,” Lois said. “Everyone wants to know what to do.”
Davis said she did not have practical answers. Her expertise lies in ethics, not the means.
Public opinion research has shown shifting opinions among doctors and the general public about hastening death. Nationally, 72 percent of Americans believe that doctors should be allowed by law to end a terminally ill patient’s life if the patient and his or her family request it, according to a 2018 Gallup poll.
Lois said she’s seeing societal attitudes begin to shift about rational suicide, which she sees as the outgrowth of a movement toward patient autonomy. Davis said she’d like to see polling on how many people share that opinion nationwide.
“It seems to me that there must be an awful lot of people in America who think the way I do,” Davis said. “Our beliefs are not respected. Nobody says, ‘Okay, how do we respect and facilitate the beliefs of somebody who wants to commit suicide rather than having dementia?’ ”
If you or someone you know has talked about contemplating suicide, call the National Suicide Prevention Lifeline at 800-273-8255, or use the online Lifeline Crisis Chat, both available 24 hours a day, seven days a week. People 60 and older can call the Institute on Aging’s 24-hour, toll-free Friendship Line at 800-971-0016. IOA also makes ongoing outreach calls to lonely older adults.
As Robert Fuller lay dying, he knew he was not alone.
His husband, Reese, stood by his head, crying into a pink towel. They’d been married that morning. A soprano sang over the mezzo piano melody of a violin, soft, but enough to fill the small, crowded room. Those closest to him laid their hands on his arms, torso, thighs and shins.
Downstairs, in the common room of Primeau Place, the affordable housing complex in which Fuller lived, the atmosphere was jovial, full of memories, food and music.
But later, in the bedroom as Fuller’s eyes closed, the gravity of the moment was palpable — to be there was an honor beyond grief.
Perhaps a few people in the room had watched a person die. It seems unlikely any had ever received an Evite to a combination wedding/death-day themed with Hawaiian shirts, courtesy of the host. But there’s a first for everything.
There are those by profession or by predilection who choose to stay with the dying until the dying is done, to comfort the loved ones left behind and ease the souls of the deceased into whatever comes next. They sit in calm vigil so that others, like Robert Fuller, need not be alone.
These are their stories.
Nancy Rebecca
Nancy Rebecca performs a marriage ceremony for Reese Baxter and Robert Fuller.
At 10:30 the morning of Robert Fuller’s death, Nancy Rebecca joined Fuller and Reese Baxter in marriage.
She anointed them with nag champa oil, rubbing the scent of magnolia and sandalwood into their hands and asked each to take the other in lawful and spiritual marriage. They obliged.
For nine and a half hours, the two were wed. And then, at roughly 8 p.m., Fuller exhaled his final breath.
To Rebecca’s eyes, it wasn’t the end of Robert Fuller. This was simply a new beginning.
Rebecca isn’t just a marriage officiant. That happy task was more of a favor than a calling.
Rebecca is a healer of conventional and unconventional methods. She practiced as a hospice nurse for eight years, caring for people as they groped blindly toward the eventual conclusion of life. That work takes a toll on the living as well as the dying. In 1994, she bought a book on meditation and gave the calming practice a try.
Everything changed.
“I went to bed and I had a spontaneous out of body experience,” Rebecca said. “When my spirit came back to my body I could see energy fields and I could see spirits.”
Initially, Rebecca found the experience overwhelming, she said. After all, she was a registered nurse, trained in Western medicine. Seeing spirits and energy fields simply wasn’t done.
“In some ways, the energy fields I see around people are quite beautiful. That is not what was disturbing me,” Rebecca said. “It didn’t fit with what I thought to be the truth.”
Rebecca decided to consult professionals.
Rebecca’s mother was a psychiatrist, her father a medical doctor. Afraid of going to an outside physician with her concerns, Rebecca went to her parents. Her mother reassured her.
“There’s nothing wrong with you,” her mother said.
It took time to process her new, perceptive abilities, to parse what and who she was seeing. But it afforded her the capacity to stay with people under her care, observing the angels that came to visit them and helping them understand their own brief glimpses into the beyond at the end of their lives.
Rebecca works mostly with the living these days, helping them to heal their bodies by righting their energies through meditative practice. However, her wife had known Fuller for years, and although he didn’t feel that he needed her healing talents, the pair did have discussions about what came next.
One day, she asked him what he thought the afterlife would be like.
“He said, ‘Well it’s a realm of judgment and grace. For me I hope it leans a little more toward grace,’” Rebecca recalled.
“I said, ‘Based on my experience, it does,’” Rebecca said.
Sile Harriss
Sile Harriss, a music-thanatologist by training, played harp for the dying and their families for nearly 20 years.
The harp in Sile Harriss’ apartment is roughly 22 pounds and rises to the level of her chest when she stands next to it. The burnished gold of the maple wood glows in the low light — though she’s had it for decades, the instrument looks as though it was purchased the day before.
It’s small for a harp, Harriss said. It’s a Celtic harp, not an orchestral version, meaning it lacks pedals and has fewer strings, a deficit made up for in part by small levers at the top of each string that allow her to adjust the note produced by a half step.
That’s OK, though. She could hardly bring a larger instrument into hospital rooms.
For nearly 20 years, Harriss worked as a music-thanatologist, employing ancient melodies and lyrics to respond to the needs of the dying and their families. It’s a unique profession — Harriss estimates there are only 100 of her colleagues in the United States.
Music-thanatology is more than beautiful music, Harriss said. It’s about using the cadences and meters of musical traditions from the Middle Ages to support people through the process of dying.
“Actively dying can be hard work,” Harriss said. “We’re using the music as support, able to observe and discern the sense in the room.”
While there is a repertoire of music, every session is individualized to the needs of the patient and their families. Music-thanatologists react to the breath of the patient, their heart rhythms pumping through the monitors and to the emotions of those watching them go.
Metered, comfortable lullabies might give way to unmetered plain chant as the body systems fail and the vitals weaken, requiring a piece with less structure. Some sessions involved a single phrase or bars of music used repetitively. Sometimes, relatives would request a loved one’s favorite song, or need care themselves.
If family dynamics got tense as the end neared, it was Harriss’ duty to tend to their unspoken emotional needs.
“The work at that time is to work with the family before I get to grandma,” Harriss said. “They need to let go what their hopes have been.”
Harriss trained at the Chalice of Repose, a school located near Missoula, Montana. She found herself looking for a new purpose after her marriage of 30 years ended, and a friend mentioned the school. The idea captured her, and she began preparing to move from Seattle before she was even accepted.
“The letter came 10 days before school started,” Harriss said.
Harriss would spend two years training with 14 classmates, memorizing the repertoire, learning Latin and ultimately signing on as harp faculty. When she began craving life in the city again, she moved to Portland and was hired at Providence Portland Medical Center. If her beeper went off, even in the wee hours of the morning, she would take her harp in its case, go to the bedside and begin to play.
Over time, Harriss developed neuropathy in her left hand — she can no longer feel the strings underneath her fingers and plays the harp through muscle memory. Still, the music emanating from her instrument is warm and calming.
“I’m just in awe and grateful for the opportunity to have been with people this way,” Harriss said.
Arline Hinckley
Arline Hinckley believes in doctors and medicine. She also believes in the right to die.
“We have a wonderful medical care system. It can work miracles,” Hinckley said. “Unfortunately, the tendency with all of this great medical care is to continue to treat people even when it isn’t going to benefit them.”
Hinckley is a board member and volunteer with End of Life Washington, the organization that helps patients like Fuller navigate the complicated road to dying with dignity. In the book “Extreme Measures: Finding a Better Path to the End of Life” by Dr. Jessica Zitter, Zitter compares the medical community’s response to terminal illness as a “conveyor belt,” Hinckley said.
“If you are very ill and get put on a respirator, that’s one way to get on the conveyor belt,” she said. “Artificial food and hydration is another way to get on it. Aggressive chemotherapy, and that kind of thing.
“Once you get on that conveyor belt, it is hard to get off. It is hard to say, ‘This is not what I want, please let me die,’” Hinckley continued.
Her experience in an oncology department after she graduated college convinced Hinckley that people needed a legal right to get off that conveyor belt. She saw many people die, sometimes horribly — the treatment was worse than the disease, she said.
Hinckley worked to get the Death with Dignity initiative on the ballot in Washington, more than a decade after the first of such laws passed in Oregon. She helped educate people on what it meant, and found that even those who did not want to use the law themselves saw value in affording others the opportunity.
She has also assisted people through the process herself.
“People are so full of grace and bravery at that time. They’re very determined,” Hinckley said. “The medication tastes terrible and some people have difficulty swallowing it, but I’ve seen 85-year-old, 95-pound ladies just chug that stuff. They’ve made up their mind, taken care of unfinished business, mended fences, come to a spot religiously where they feel this is OK. They’re just ready.”
End of Life Washington volunteers stay after the person has fallen asleep to help family and friends with the passing. The process can be healing for the living as well — the planning of the death allows people to come to terms with it more totally than a sudden loss, she said.
“They’ve done the work. So, of course they’re sad, but in some ways they’re relieved as well because the person they love is not going to be suffering any longer,” Hinckley said.
Only eight states allow people the option to take their own lives. The most recent law passed in New Jersey in March. Organizations like End of Life Washington are working to maintain the momentum so that everyone, regardless of their location, has an option at the end.
“People deserve a choice,” Hinckley said. “It’s not a choice everyone might make, but options are important to people.”
When Robert Fuller decided to die, it was a choice informed by personal experience.
Fuller, 75, suffered from terminal cancer. He started feeling sick in July 2018. By September, a CT scan found a tumor growing under his tongue. The news didn’t surprise him.
“I knew it was there,” Fuller said in April. “I could smell it.”
It was a sour scent, he said. More basic than acidic. He could smell it clearly when he was in bed, his face pressed against his pillow.
“I wrapped my head in a pillow trying to smell it. I wasn’t attempting to do anything else,” Fuller said. His body might be failing, but his humor was intact.
Fuller considered treating the cancer medically. He started a round of chemotherapy in January, but didn’t keep it up. As a nurse to the dying, he’d watched cancers take hold despite desperate attempts to hold the disease off.
In many cases, the supposed cure was as bad as, or worse than, the disease itself, he thought.
So, Fuller worked with a medical team to get access to life-ending drugs under Washington’s Death with Dignity Act. On May 10, surrounded by family, friends and some journalists, Fuller injected the drugs into his gastric tube and fell asleep. He would not wake up.
Fuller was able to die on his terms because he found doctors willing to help him and a pharmacy willing to procure or make the medicines he needed. But that isn’t always guaranteed.
The medical community is far from settled on the question of Death with Dignity or, more generically, physician-assisted suicide (PAS). The Code of Medical Ethics, a guide provided by the American Medical Association, opposes PAS, saying that it is “fundamentally incompatible with the physician’s role as a healer.” Add onto that a growing consolidation of medical services under Catholic organizations, run under the belief that suicide is a mortal sin, and the question of assisted dying rises from an ethical debate to a religious edict.
Doctors have covertly engaged in helping their terminal patients die for decades, but access to this style of care was based on relationships and stealth, not need or as a right. As the right-to-die movement expands to new states, advocates hope that will change.
Lay of the land
Only eight states and the District of Columbia afford people the right to die with the help of their physicians. New Jersey is the most recent after the state legislature passed a law similar to Washington’s in March.
Under those laws, physicians decide if they want to help their patients through the legally prescribed process. Some hospitals ban the practice outright. Individuals question their role. As a doctor, having sworn the Hippocratic Oath to “do no harm,” could that include prescribing death?
According to the Washington State Department of Health, 115 physicians and 51 pharmacies assisted 212 terminal patients in 2017 — the last year for which numbers are available. The vast majority operate west of the Cascades. On average, only 10 percent of people who use the law live east of the mountains.
Much of that is related to access, since many of the health care facilities on the east side are associated with Catholic organizations, said Helene Starks, an associate professor of bioethics and humanities at the University of Washington who has studied assisted death for nearly 30 years.
“The fact is that the Catholic health systems are the primary providers in the state outside of the western side, and the non-Catholic organizations are more prevalent on the western side than eastern side,” Starks said.
The UW Medical system — which for these purposes primarily includes Harborview Medical Center, University of Washington Medical Center and Valley Medical Center — allows its doctors to participate in the Death with Dignity process.
Not all want to, however.
Mollie Forrester was the associate director of social work at Harborview Medical Center, and it fell largely on her team to help patients navigate the complexities of the Death with Dignity law. But, the patients weren’t the only ones who needed help.
“It has been a powerful experience to watch doctors get this request from patients,” Forrester said. “This idea of facilitating the hastened death is a process for them.”
Forrester started with the team soon after the law went into effect in 2009, on maybe the third or fourth case that the Harborview team dealt with. The idea was that their group would coordinate the implementation of Death with Dignity, and that once it was established they would farm out the work to social workers in different disciplines.
But Harborview saw so few cases that Forrester and her team ended up handling the care altogether.
It was up to Forrester to sit down with patients asking to end their own lives and explain to them the process and help them through any logistical hurdles that might arise. Their interview might be the last time she ever spoke to those patients.
“I’m walking in and saying, ‘Hi, it’s nice to meet you, let’s talk about your death,’” she said.
Doctors needed help, too. Some refused to participate, flat out. With others, Forrester felt she was performing the role of social worker.
“From where I’m sitting, it’s easy,” she would tell them. “It’s my profession, patient autonomy and patient choice.
“They’re supposed to be healing and helping people live,” she said.
The ask
Death is the inevitable conclusion of life. Fuller knew that, had known that for a long time. He joined the Hemlock Society as a young man, a group that advocated for the right to die. The Washington state society was founded in 1988 as the AIDS epidemic ravaged the gay community.
“I believed in the cause before Kevorkian,” Fuller said, referencing Dr. Jack Kevorkian, the controversial physician who helped as many as 130 people to their ends. He was nicknamed “Dr. Death” by the media and was ultimately arrested and sentenced to up to 25 years in prison for second-degree murder. He got out in eight.
Robert Fuller injects a morphine solution through his gastric tube.
The national Hemlock Society considered itself predominately educational, and when the Washington chapter wanted to assist people in their deaths, they split off to form Compassion in Dying. In 2003, Compassion in Dying was renamed End of Life Washington.
Arline Hinckley is a board member and volunteer for End of Life Washington. She and others in her organization offer advice to medical institutions and direct assistance to individuals who need help finding doctors or prescribing pharmacies. They may also be with the patients at their deaths.
“I feel like it’s a tremendous honor to be allowed in someone’s life at that very vulnerable time,” Hinckley said.
Hinckley’s second job out of graduate school in the 1970s was performing a social work role on a hematology/oncology team, caring for deeply ill patients.
“I saw a lot of people die very badly,” Hinckley said. “I was asked to help a person and I could not do that. I felt terrible, because they were suffering so greatly.”
Her experience led her to join the then-Hemlock Society.
“I have always felt that what happens to your body should be directed by you,” Hinckley said. “People deserve a choice. It’s not a choice everyone might make, but options are important to people.”
In fact, of the small number of people in Washington who use Death with Dignity in a year, as many as 30 percent never take the medications. Some got the prescription and never filled it. Others planned to, but died before they could get the medications.
The medications become almost a safety net, not because people want to die, but because that element of choice is important to them, Starks said.
“I’ve never met anybody in death with dignity who wanted to die,” Starks said. “They wanted to live a lot longer, but they also didn’t want to be a victim of their own illness.”
Even though it’s legal, it’s not easy to come by the medications that are necessary. Many people don’t know they have the option. Hospitals and pharmacies aren’t advertising that they provide these services.
In fact, a pharmacist who spoke to Real Change for this article did not want to be named at all.
“People judge you for the kind of activities that you’re doing and sometimes they equate that with good and evil,” the pharmacist said. “‘You must be evil because you’re providing this.’ Really? If you talk to this family that is suffering with this patient, that are looking for not a means to an end but an option at the end? You’re depriving them of options.”
Moving forward
The medical community is still grappling with PAS.
The issue came up before the American Medical Association in summer of 2018 and was effectively tabled rather than rejected or affirmed.
In November, the AMA’s House of Delegates deliberated a report from its Council on Ethical & Judicial Affairs (CEJA) that looked into the legal and ethical ramifications of PAS. The existing guidance in the Code of Medical Ethics remained unchanged, but delegates also voted to take the matter up at a future policy-making meeting.
Attitudes are changing. More than two-thirds of Americans believe that doctors should be allowed to help terminally ill patients who are in pain to die, according to a 2015 Gallup poll. Young adults were particularly supportive with 84 percent of people between 18 and 34 on board with the concept.
For some, the act is still seen as suicide. Robert Fuller believed differently.
“It’s taking responsibility for the rest of my life,” Fuller said.
For the last hours of his 75 years on Earth, Robert Fuller was married to a man who he loved.
“I anoint you,” said Nancy Rebecca, a nurse, clairvoyant and sometime wedding officiant, “Mr. Robert and Mr. Reese Baxter-Fuller.”
The cameras flashed, the tape rolled as Fuller and Reese Baxter exchanged vows, rings and a chaste kiss. It was a simple wedding. The couple sat on the couch in their shared apartment in Primeau Place, a senior housing building on Capitol Hill. Baxter wore a black and white sweater, Fuller a relatively restrained Hawaiian shirt with large, colorful flowers against a cerulean background, ready for the party that waited for the newlyweds downstairs. The ceremony commenced at 10:30 a.m. By evening, Robert Fuller would be dead.
The cancer was slowly choking him
Robert Fuller planned every detail of his death. He knew who he wanted to see — invites had gone out weeks before — and what music he wanted to play him out. He’d also planned the food, although he himself couldn’t eat it.
Fuller was dying of a virulent strain of cancer, a disease that lodged itself in his throat and, over the course of a year, was slowly choking the life from him. At the end of March, he already had significant difficulty swallowing, leaving most of his meals to be transmitted through the gastric tube installed in his stomach, hidden by clothes that hung on his tall, wasted frame.
A nurse by training, Fuller knew what the future held if he decided to wage chemical war against his opponent.
“I’ve taken care of patients like me,” Fuller said, sitting in his recliner, staring out his window at a view of the sunlit Puget Sound. “I have a friend whose father died of the same thing 50 years ago. He did pursue all of it, all of the radiation. I only did a little bit of it. He did it all and it was a horrible death.”
That slow, painful, fruitless fight was not how Fuller wanted to spend his final days. He wanted to die as he lived — on his terms. He turned to Death with Dignity.
Robert Baxter-Fuller sits on his bed in blue pajamas. The clock, above, ticked down the minutes until 3 p.m. when Fuller would ingest his life-ending medications.
A public death Death with Dignity began as an initiative passed by Washington voters in 2008. It allows terminal patients to end their lives by ingesting toxic amounts of drugs rather than suffer in their final months, weeks or days. They ease into sleep and never wake up.
Fuller became aware of it when a woman from California moved into the senior housing building in which he lived and helped manage.
“Wendy was her name,” Fuller recalled. “She started telling me about it pretty quickly, because that’s what people do when they meet me. Strangers tell me everything. On the bus, I don’t care where. They confess to me, they tell me their worst medical problems. They do. It just happens.”
Wendy moved to Washington to kill herself. It was one of the few states that allowed it. Although California would follow suit in 2016, Wendy didn’t have that long.
On the day she was to die, Wendy had a sign put on her door that read “Do Not Disturb.” When it came down, she was gone.
“I said, ‘Woah,’” Fuller said. “That solidified it for me. That’s what I’m going to do.
“But,” he continued, his voice hushed into a conspiratorial whisper, “mine is not going to be private. That is not the way I lived my life.”
Sharing stories, saying goodbye
Everybody seemed to call it something different. “Death Day.” “The Day.” Fuller didn’t care. When he spoke of it, he generally just referred to it as May 10.
“I’ll see you on May 10,” he told visitors in the days leading up to the event.
A gaggle of brightly colored helium balloons marked the entrance to Primeau Place’s common room, an open space lit harshly with fluorescent light. A piano stood against the eastern wall, a drumset assembled beside for the occasion.
People flooded the space, spilling out into the small patio that was sheltered from the spring sun by large trees. They munched on hors d’oeuvres, laughed and shared stories of Uncle Bob, as most people called him.
All the while, Fuller held court, seated next to his new husband as his guests came, one by one, to say their final goodbyes. He held a walking stick sanded down and polished into a smooth, golden surface and carved with tight grooves.
Someone he had sponsored made it for him while still using crack, Fuller had said more than a month before.
“I think that’s significant,” he said. “For people who are still into drugs and think nothing positive can still come out of this.”
That depth of compassion, of acceptance and understanding drew people to Fuller. He’d sponsored many in the room through the Alcoholics Anonymous program. He spent 10 years as a nurse in King County jail. He was an active member of St. Therese Catholic Church. He arranged for Primeau Place to “Adopt-A-Drain” outside the building to give back in another way.
Fuller was many things, said Scott Farrell, who had met Fuller at a spiritual retreat for gays and lesbians more than 40 years prior.
“He was always there for me,” Farrell said. “He was a light in my life. We haven’t been in touch a lot lately, but whenever I see him, it feels like there is no time.”
Nicholas Bross was one of the people Fuller sponsored. He was dressed in a Hawaiian shirt, a gift from Fuller specially for his big day.
“I’m supportive of his choice, his decision to do this,” Bross said. “I’ve been telling people that if I were in his shoes, I’d be doing the same thing.”
It took time for some to accept what he wanted to do, Fuller said. Most made their peace with it after the initial shock. Fuller gave them the space to process on their own terms. They might not be ready, but Fuller was. He had been for decades.
A partygoer leans over to speak to Robert Baxter-Fuller.
Escaping death during the AIDS epidemic
It was 1985. Fuller was living in Chelan, Washington, a handsome young man in his early 40s playing Schroeder, the philosophical musician, in a local production of “You’re A Good Man, Charlie Brown.”
He stopped paging through an old album and touched a photograph of his younger self with a frail finger. In the moment, a dapper Fuller was standing on stage with a seated woman playing a smitten Lucy.
“I have HIV in this picture, but I don’t know it,” Fuller said.
He had moved to Chelan to get away from the death he saw ravaging the gay community in Seattle. Fuller, a recovering alcoholic, watched as two or three young men a week disappeared from his Alcoholics Anonymous meetings.
“It just kept going, so I moved to Chelan,” he said. “There were no gay people and no AIDS, I told myself.”
He’d already taken the test by the time he appeared in that musical. The results would come back negative, but in his bones, he knew they were wrong.
That was when Fuller began packing his bags.
That was the phrase his community used to describe planning for their own deaths. Getting your living will in order, designating a power of attorney, making arrangements for your loved ones.
In the 1980s and 1990s, HIV could be a death sentence. Fuller stood by the sides of two men who he loved as they died. Chet, a swarthy man seated next to Fuller as the pair stare out over a lake, would be reduced to skin and bones in a matter of months. Bill, whom Fuller thought of as his first husband, although they could not legally wed, also died. Tom, an artist who Fuller described as a Jesus figure, appeared in a picture with Fuller at Chet’s funeral.
He would be dead a year later.
At the height of the epidemic, Fuller “packed his bags” every six months to a year. His viral load soared to 700,000 and his T-cell count dropped to 76, laying his body open to infection and possibly death. But he survived until the cocktail of drugs created in the late 1990s hit the market. He resisted the previous medications — those cures also killed.
Until his death, Fuller’s viral load was undetectable, but he carried the symptoms of HIV on his body. When he walked, he would pick up his feet like they were on marionette strings and plant them slowly and carefully on the carpet. It was called peripheral neuropathy, he said, lapsing into the assured cadences of a health care professional.
The loss of proprioception that comes with peripheral neuropathy brought Reese Baxter into his life. Baxter needed a place to stay, Fuller needed someone to help him — he’d fallen many times and struck his head.
“I didn’t know it would be three years,” Fuller said.
How to die with dignity
Dying seems easy. After all, we spend so much time and energy avoiding it.
Dying with dignity? That takes work.
Robert Baxter-Fuller prepares a mixture of morphine and CBD oil to ease his pain.
First, you have to find a doctor willing to let you die. The law doesn’t mandate that doctors participate in Death with Dignity, it only says that they can. Many won’t, for personal reasons. Others can’t because they are forbidden to do so by their employers.
Hospitals that belong to the University of Washington medical network opt in, said Professor Helene Starks, an expert in medical ethics who has been studying end-of-life issues for three decades.
“I think that the general feeling is as a public institution enacting a public law, there was an obligation to provide access,” Starks said.
Swedish Medical Center, in contrast, is affiliated with Providence Health & Services, a Catholic nonprofit organization founded by the Sisters of Providence in 1856. The Swedish Medical Center in Seattle does not forbid its employees from engaging in Death with Dignity, according to a position statement issued after the law passed, although some Catholic-affiliated hospitals do.
This partly explains why as much as 90 percent of people in Washington who use the act do so west of the Cascades — access is extremely limited in the eastern portion of the state.
Fuller was able to receive care at Harborview Medical Center. First, he had to make an oral request. The doctor evaluated him to make sure that he was of sound mind — people with dementia cannot use Death with Dignity. It takes two doctors, one attending and one consulting, to complete the process.
No less than 15 days later, you have to make a second oral request. Fuller’s doctor accidentally scheduled his follow-up 14 days after the initial appointment. He had to come back the next day.
Once a person has jumped through these hoops and gets the prescription for the drug, they must find a pharmacy willing to fill it. This gets complicated, because pharmacists, like doctors, do not have to fill the script if they are opposed to the practice and some don’t have the expertise.
If you can find one — and there are a few in the area — the pharmacy has to be able to access the drugs.
Secobarbital — marketed under the name Seconal — is the preferred option. Called “reds” back in the day, secobarbital was used as a sleep aid until the danger of overdosing and negative interactions with alcohol became apparent.
Bausch Health, formerly Valeant Pharmaceuticals, bought the patent for the drug when it expired. Although the chemical makeup of the drug hasn’t changed in 80 years, the price did. When California passed its End of Life Option Act in 2015, the price of the drug doubled, according to NPR.
Today, the 100 capsules needed to end Fuller’s life would have cost him more than $3,000 without insurance.
Medical professionals created a cheaper cocktail of four drugs that cost roughly $400, but that is where the expertise comes in. A generic pharmacy can’t make the cocktail, but a compounding pharmacy can.
In the end, Fuller would use the cocktail — his pharmacy was not able to get the necessary amount of secobarbital.
The whole process takes weeks if not months for people who, by law, must have a six-month prognosis.
“You have to adhere to a strict process,” Fuller said. “You don’t just walk in and say, ‘I want to get rid of Grandma. I hear you have death panels.’”
Final act
As the clock ticked closer to 3 p.m., the mood at the party changed.
The jovial atmosphere gave way to the weight of the moment as the minute hand ticked by, moving inexorably closer to the time of Fuller’s death.
Robert and Reese Baxter-Fuller look at each other as people say their last goodbyes to Robert.
He went upstairs, his husband on one side, his walking stick on the other. There were balloons outside his apartment door as well, framing a nametag attached to the name plate that read “Uncle Bob.”
Bodies pressed into the small apartment, filling the T-shaped corridor that led from the front door to Fuller’s room on the left and the living room on the right. Fuller went into his room with a select few — he changed into a ocean-blue set of shiny pajamas, the “Hugh Hefner” pajamas, as he liked to call them.
He lay there, his twin bed strewn with pink rose petals, Baxter at his side, holding his hand.
In March, Fuller said that Baxter would hold his hand in a “fishhook,” a wrestling grip that is next to impossible to break until one of the parties lets go.
“He’s now the person whose hand I want to be holding when I die,” Fuller said. “He’s going to give me the cue when I’m falling asleep, or when I seem to be sleeping, that I can leave.”
When the doors opened, Fuller’s friends, adopted family and loved ones shuffled into the room until there was no space left. People squeezed into every nook and cranny, shoved into a closet, trying to use a flimsy clothing basket for support.
By law, Fuller had to ingest the drugs on his own. Many choke it down — the taste is terrible, bitter. He took a syringe and injected the poisonous cocktail into his gastric tube.
Almost a third of people who get the prescriptions never take it. Not Fuller. Now, he would die.
Baxter gripped Fuller’s hand, the other holding an electric pink towel he used to absorb his tears. A violinist put bow to strings, playing Amazing Grace and Ave Maria. As Fuller’s eyes closed and his body went still, the observers raised their voices in song. Those closest to him placed their hands on his body in farewell.
Robert Baxter-Fuller eases into a final sleep.
Technically, he was asleep. Death would come later, after the drugs wrested his final breath away from the cancer that tried to steal it. But Bob Fuller was gone.
