Late on a Sunday night in the hospital, my Haitian patient’s wife came in to help translate. I don’t know what I would have done without her. I needed to tell my patient that the tumor growing in his chest was pressing on his aorta. If he needed CPR overnight, the chest compressions might prove fatal.
As I explained all this, I looked back and forth from the wife to the patient like a spectator watching a tennis match. Her face contorted in horror at the news, but he remained stoic, with his arms crossed, and kept repeating one word: lakay. Finally I asked the wife, “What islakay?” She looked at me and said: “Home. He wants to go home.”
One of the few things that people across all backgrounds and cultures value in common is home. An overwhelming amount of research from around the world has shown that home is where most patients and their family members would like to take their last breath. But not everyone has that option.
Often, the underlying disease, rather than the patient’s wishes, dictates their place of death. Patients with cancer, for example, die at home more often than those with heart disease. (Cancer progresses in a more predictable way, so those patients are more likely to use hospice services at home.)
Social support is another factor. Frequently, those close to the end require 24-hour supervision, which a relative may not be able to provide. And caring for the terminally ill is extremely taxing — for caregiver and patient — so hospitals seem like the better option.
Geography can also determine where one is more likely to die. How far one lives from a hospital is directly associated with the chances of dying there. No surprise, then, that the nation with the greatest density of hospital beds — Japan — is also where patients are most likely to die in one. (On the flip side, in areas without adequate medical and hospice resources, patients may die at home when they could have been saved by professional care.)
Race, finally, plays a role. Although the proportion of home deaths since the 1980s has risen, 43% of blacks and 44% of Latinos die in hospitals, compared with 34% of whites. (In the 1970s, the percentage of blacks and whites who died in the hospital was the same: 54%.)
That’s in part because home care is expensive, and whites are more likely than other racial and ethnic groups to have access to home services through their insurance.
Culture, however, often is an even more important determinant. Many studies have found that minorities generally receive fewer medical services over the course of their lives when they are relatively stable. But at the end of life, minorities are more likely to receive aggressive care, are more likely to want resuscitation and intubation, and therefore end up spending more time in the intensive care unit than whites.
One important solution to so many people dying in hospitals would be to build more hospice homes in inner cities. But if we want more people to have the option of dying in their own homes, we need to push insurance providers to increase end-of-life options. Although most insurance pays for hospice care, many patients also require increased support at home, which is not typically covered.
But we also need a culture change, convincing patients and their families that more is not always better in healthcare, particularly when death is inevitable.
Many patients want to die at home but are pressured by relatives and even some physicians to keep trying Hail Mary procedures that end up prolonging suffering. Having the option to die at home is perhaps one means for patients to regain some semblance of control.
Given how advanced my Haitian patient’s cancer was, I knew that there was no way we could win this war, which made me desperate for every small victory. So I savored the moment as he collected his belongings to go home to hospice services, knowing that a death in one’s own bed was a privilege that many do not have.
The day he was to die, Vernon Gearhard had breakfast with Fran, his wife of 57 years, their three children and their spouses.
He listened to some of his favorite music – classical pianist Johannes Brahms and opera singer Kathleen Battle – and around noon, he and Fran sat on their terrace. The sun peeked out from behind rain clouds and two bald eagles and several raven flew around nearby, lingering in the area as the couple watched.
The 84-year-old master mason had planned for this day. Friends and family had been visiting for the past month, many from nearby towns, others from as far away as Vermont. He had spent the last week with his family, including his seven grandchildren and three great-grandchildren.
It was time.
The medication – powder from 100 capsules of the barbiturate Seconal – had been mixed with water, creating a slurry-type paste that Vern could drink. He went into the bedroom and grabbed the bar he needed to use to pull himself from his wheelchair into a sitting position on the bed.
“This is the last damn time I have to grab this bar,” he told his wife, Fran.
He drank the medicinal slurry, washing it down with orange juice. His eyes rolled backward and he lay back on the bed. Thirty minutes later, surrounded by his family, his heart stopped beating.
“Just our children came in while he was dying,” Fran said. “I promised him that someone would be touching him the whole time.” She stayed with his body until the hearse arrived.
Fran remembers that day – March 17, 2015 – with tears and joy.
“It was so easy for him, finally,” she said. “It has been a long time since anything had been easy. … It was really a joyful thing.”
Vern, who had Parkinson’s disease, was given less than six months to live when he decided to end his life by taking prescribed medication through Oregon’s Death With Dignity Act.
On President’s Day, Feb. 16, 2015, Fran and Vern gathered their family together and told them of his decision. Their three children and their spouses were supportive. So was the rest of the family.
That support, Fran said, made it possible. “The kids really, really, really were there for us. I couldn’t have done it without their support.”
Since Oregon’s Death With Dignity Act was enacted in 1997 more than 860 terminally ill people have chosen to use it to end their lives. To do so, a patient must get the agreement of two doctors that he or she has six months or less to live. The patient also must go through an intensive interview process to determine his or her mental state and decision-making capabilities.
It’s not easy, Fran said, noting that the Gearhards had help from Compassion and Choices, a nonprofit advocacy group that provides trained volunteers and consultants to help terminally ill patients seeking end-of-life options. The Gearhards connected by phone with a Compassion and Choices volunteer in Ashland.
Vern was diagnosed with Parkinson’s disease about 20 years ago, when he was in his early 60s though family members say he had symptoms of the disease, including tremors, in his late 50s. He took medication and led a physically active lifestyle, which seemed to keep the disease’s symptoms at bay.
Parkinson’s disease is a progressive disorder of the nervous system that affects movement. It develops gradually, and early symptoms include tremors. In the later stages, muscle stiffness makes it difficult or impossible for patients to walk and take care of themselves.
Vern was born in Chicago, and grew up in Martinez, Calif. He joined the Navy and served in the Korean War from 1950-54. He then attended Cal Poly on the GI Bill and earned a degree in agronomy. Vern and Fran began dating while she was in college – she earned an education degree from San Francisco State University. They married her sophomore year in college. Several years later they bought acreage north of Merrill in 1965 and started farming.
Fran taught for 34 years, 28 of those as a fifth-grade teacher at Shasta Elementary in Klamath Falls. They raised three children – Theresa, Marcus and Paul.
The family farmed for 15 years, but masonry was in Vern’s blood. His grandfather, an Austrian immigrant, was a mason and Vern apprenticed under him. As farming changed, Vern spent more time on masonry and eventually worked at it fulltime, earning a reputation as master mason with an artistic and signature style.
After his Parkinson’s diagnosis, Vern continued to work as a master mason, creating artistic fireplaces, homes and other pieces for private clients as well as for local businesses. Some of his more prominent pieces include the Klamath Rotary sign downtown, the sign at the Herald and News building off Foothills Boulevard and the rock sign at Kla-Mo-Ya Casino off Highway 97 near Chiloquin.
He helped build his house, high on a hill, an artistic nod to a mason’s mastery of his craft. Inside, a rock fireplace dominates the great room and touches of his work are throughout.
Vern loved classical music, opera, and good literature. He belonged to two book groups and owned the first version of Kindle, an electronic book reader that launched in November 2007. By the time he died, he owned his eighth Kindle.
He also was a huge San Francisco Giants fan. “He always recorded the games he couldn’t watch,” Fran recalled. “God pity you if you told him the score before he could watch it.”
When he was 80, his symptoms — tremors, muscle and balance issues — forced him to retire. The disease progressed quickly after he stopped working. First, he had to use a cane and later, a wheelchair.
As the disease progressed, Vern needed help with everyday tasks, and then could no longer use his hands well enough to turn the pages on his Kindle. In his last month, he was sleeping nearly 20 hours a day and had limited energy.
“When he had to quit work, that was huge. When he had to quit driving, that was huge,” Fran said. “When he lost the ability to read, that was it.”
In November 2014, Fran, 78, faced her own mortality when she was diagnosed with stage 4 colon cancer. She decided to go through treatment so she could be there for Vern, who was thinking about his end-of-life options. She had surgery, followed with chemotherapy in January, and currently is cancer free.
Vern approached his doctor, who said though he supported Vern’s decision, he couldn’t write the Death With Dignity prescription. His physician did prescribe hospice, which is for patients who have been diagnosed with six months or less to live.
The Gearhards were able to find two other Klamath Falls physicians who were willing to consider Vern’s decision and work with them. The law requires both a prescribing physician and a consulting physician to agree on a diagnosis and prognosis as well as whether Vern was mentally capable of making the decision to end his life.
Klamath Hospice helped with Vern’s care and supported the family during his last months of life. Hospice does not advocate for or against the Death With Dignity Act, but provides support for patients and their families, Fran said.
When the time came, the law required that Vern take the prescription himself, holding the mug and drinking the medication without aid.
“His big worry was that he would be beyond the point where he could do it on his own,” said Dennis Ross, Vern’s son-in-law. “Your ability to follow through could be ended at any time.”
Ross was there the day of Vern’s death. An hour before he was to take the prescription, he had to take anti-nausea medication. The medication made him sleepy and he told his family: “I’m getting sleepy. We better get on with it.”
Ross, who had watched his parents die, believes the dying should have choices. His parents lived in California and didn’t have the same end-of-life options Vern did.
He watched Vern’s quality of life decline and supported his decision. “There’re just a thousand little things that take your dignity away,” he said. “It just piles up.”
But the end game is up to the patient.
“You can make all the plans, but when it comes down to drinking that stuff, that’s an incredible amount of courage,” Ross said.
Vern’s memorial was March 21 at his daughter’s home, a rock house he helped build near his own, and cars lined the road as family, clients and friends came to celebrate his life. Vern had picked the music he wanted played at his funeral – Mozart’s “Concerto in D-Minor, Second Movement” and John Lennon’s “Imagine.”
The Concerto in D-Minor was a piece Vern fell in love with in 1981 while he was collecting rock in Langell Valley. “He always listened to classical music while he worked,” Fran said. “That day he came home and said, ‘This is what I want played at my memorial.’ Before he died, he played it for his friends who came to visit, and for the hospice worker.”
Vern was an atheist and was curious about death.
“He always said he wanted to know so he wanted to be aware,” Fran said. “He was always very articulate about his perspective of life and death.”
“For us and for Vern – it was his decision – it was right,” she added. “It’s not for everyone, I understand. I just want to share the opportunity this law gave us.”
Fran recalled her husband’s last hours with joy.
It was around noon, just before the two of them went to sit on the terrace.
“Vern started to sob, and I asked, ‘What’s going on?’ He said, ‘I just feel so much love.’”
Fran smiled. “It’s a story with a beautiful ending.”
Dr. BJ Miller, a palliative care doctor and Executive Director of San Francisco’s Zen Hospice Project, shares insights about end-of-life care in the recent TED Talk “What Really Matters at the End of Life.” Beyond his medical training, Dr. Miller’s unique perspective was shaped by a tragic near-death accident that took his feet and arm, but left him with an understanding of suffering and a deep desire to provide a new approach to the way our society cares for the dying. Here are a few things we learned:
Priorities change at the end of life.
“We know from research what’s most important to people closer to death: comfort. Feeling unburdened, and unburdening to those they love.
Over Zen Hospice’s nearly 30 years, we’ve learned from our residents in subtle detail [that] little things aren’t so little. Take [a resident named] Jeanette – she finds it harder to breath one day to the next due to ALS. Well guess what, she wants to start smoking again… not out of some self-destructive bent, but to feel her lungs filled while she has them. Priorities change.”
Don’t numb the senses, indulge them.
“Seriously, with all the heavy-duty stuff happening under our roof, one of the tried and true interventions we know of, is to bake cookies. As long as we have our senses – even just one – we have at least the possibility of accessing what makes us feel human, connected. Imagine the ripples of this notion for the millions of people living and dying with dementia.”
Death can give more meaning to moments in life.
“There’s always a shock of beauty and meaning to be found in what life we have left. If we generate and love such moments ferociously, maybe we can learn to live well not in spite of death, but because of it.”
This is only a sampling of the wisdom shared in Dr. Miller’s 19-minute talk. Click here to view the full video. Complete Article HERE!
After nearly a quarter-century of efforts in California to afford terminally ill patients the right to end their lives with a doctor’s help, state lawmakers and the governor may be on the verge of granting the dying that authority.
The state Assembly on Wednesday passed a bill that would allow physicians to prescribe life-ending drugs to the terminally sick. The End of Life Option Act, which the Catholic Church and others oppose, awaits final approval by the Senate — three months after that chamber passed a similar bill by a thin margin.
The fate of the legislation is likely to rest with Gov. Jerry Brown, a former Jesuit seminary student who has yet to articulate his position on the measure. Brown has expressed concern about it, based more on legislative procedure than his own beliefs.
Modeled after an Oregon law enacted in 1997, California’s aid-in-dying proposal generated passionate, often deeply personal, debate among lawmakers that cut across party lines. Their discussions touched on questions of morality and mortality; trust in doctors and God’s grace; and the right of the dying to determine their own fate versus protection for the elderly and vulnerable.
Assemblywoman Susan Eggman (D-Stockton), a former hospice worker and the author of the legislation, accepted hugs from many of her colleagues after the 43-34 vote that ended a two-hour debate on Wednesday.
“This issue is of immense importance to all Californians,” said Eggman, who was an associate professor of social work at Sacramento State before being elected.
“I was confident that the full Assembly, reflective of and responsive to the people it represents, would do the right thing and move us closer to making it possible for terminally ill Californians to decide for themselves how to manage their last days,” she said.
Assemblyman Luis Alejo (D-Watsonville) said the bill would allow a peaceful and dignified end to suffering. Alejo choked with emotion as he talked about his father, a Vietnam veteran who is in pain from terminal bone cancer and wants to make his own decisions about the end of his life.
“Respect his choices,” Alejo said.
Assemblywoman Cheryl Brown (D-Rialto) opposed the measure, arguing that doctors may be too hasty in declaring patients terminal. She told lawmakers about her son, who was near death with an infection. Physicians urged her to let him go, and she refused. Nineteen days later, he came off life support and is now a husband and father.
“Doctors don’t know everything,” Brown said.
Despite such heartfelt opposition, the proposal gained momentum after Californian Brittany Maynard, 29, moved to Oregon last year so she could end her life with drugs to avoid the debilitating effects of brain cancer. Her case was covered nationwide, and in a videotaped appeal before her death Maynard urged California lawmakers to pass the assisted-death legislation.
“I am heartbroken that I had to leave behind my home, my community and my friends in California, but I am dying and refuse to lose my dignity,” Maynard says in the video. “I refuse to subject myself and my family to purposeless prolonged pain and suffering at the hands of an incurable disease.”
In July, an earlier version of the assisted suicide bill stalled in an Assembly health committee. The legislation was revived in August after Brown called for a special session on healthcare spending, primarily to address funding for Medi-Cal.
After the bill was reintroduced, a spokeswoman for the governor said the issue merited “careful consideration,” but debating it in the Legislature’s normal course of business was “more appropriate than the special session.”
The same objections were raised by Republicans but rejected by the Legislature’s Democratic leaders.
Similar bills failed in the Legislature in 2005 and 2007, and California voters rejected a 1992 proposal that would have allowed physicians to administer lethal injections to their patients.
Eggman recently amended her bill, AB X2-15, to expire in 10 years, at which time lawmakers could review how it worked and decide whether to extend it.
The End of Life Option Act would require patients to submit two oral requests for a lethal prescription, a minimum of 15 days apart, as well as a written request. The attending physician would receive all three requests.
The written one would be signed in front of two witnesses who attest that the patient is of sound mind and not under duress.
Opponents of the bill, such as advocates for the disabled, argued that the legislation might lead those with disabilities to be coerced to end their lives prematurely.
During Wednesday’s debate, Maynard’s husband and mother were present, joined by a dozen activists who watched from the Assembly gallery. There were cheers, tears and hugs when the vote was cast.
Dan Diaz, Maynard’s husband, was emotional in his response.
“There is a sense of pride in the Legislature,” Diaz said. “Today it reaffirmed the reason Brittany spoke to begin with. The Legislature will no longer abandon the terminally ill where hospice and palliative care are no longer an option. They can have a gentle passing.”
(Does that make me a death dude? I’ll have to ask them.)
Who here is an expert in ACTUALLY dying???
Have you done it?
To achieve expert status, one usually has to be proficient in something or have done something over and over again. Hmmm… kind of tough with the death thing”, eh?. Even those who have had near death experiences are still amateurs in a way– because they’re back! They didn’t do it right the first time! 😉
This is why we LOVE the title of this book and the work that Richard Wagner, PhD has been doing for the last 30 years. Since we are all amateurs at “the death thing”, there is actually a road map for those who are dying and will be dying. Is that you?
ABOUT OUR GUEST
Richard Wagner, Ph.D. is a psychotherapist/sex therapist in private practice in Seattle, WA, 1981 to present. He has over 30 years of experience working with terminally ill, chronically ill, elder, and dying people in hospital, hospice, and home settings. He facilitates support groups for care-providers as well as healing and helping professionals. He provides grief counseling for survivors both individually and in groups settings. He is the Founder of PARADIGM/Enhancing Life Near Death, a cutting edge, health related nonprofit organization.
Dr. Wagner was awarded the prestigious University of California, San Francisco Chancellor’s Award for Public Service in 1999 for this very work.
Dr. Wagner was born in Chicago and grew up in Niles, Illinois, a Northwest suburb. He left home to attend the seminary after high school and graduated from Oblate College in Washington, DC in 1972. He moved to Oakland, California in 1972 and studied at The Jesuit School of Theology (part of the Graduate Theological Union) in Berkeley. He was ordained as a priest in November, 1975 and obtained his Ph.D. in 1981. Dr. Wagner lived in Oakland until 1978 and moved to San Francisco until 1999. He then relocated to Seattle, Washington where he lives today.
ABOUT YOUR HOSTS +The Death Chicks show was created to shine light on the tabooed topics of death, dying, grief, and loss. We’re listening to all perspectives and having the conversations that we as human beings who live and die on this earth, need to have, without fear of judgement.
+Patty Burgess Brecht is the President of Possibility for Doing Death Differently and Teaching Transitions. She is an End-of-Life Educator and Certified Grief Recovery Specialist. She is the developer of the End of Life Specialist Training and Certification (CEOLS), and teaches individuals and organizations how to Do Death Differently by not being overwhelmed or afraid of death, but to seek and experience the joy, the passion, and the even the exhilaration inherent in the honor of BEing with the dying. Her video-based, online, inspiring course is used in hospices, hospitals, home care, colleges and universities across the country and is now open to individuals who are drawn to this work.
+Myste Lyn is an Empowerment Coach who specializes in supporting women recovering from loss. Myste is an intuitive healer who reconnects women with their inner place of peace. She specializes in reducing fears, alleviating guilt, and creating inner confidence. http://www.bittersweetblessing.com/
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Eighty-five-year-old twins from Brooklyn are setting off on what they say will be their final voyage. Their plan to die at sea has an undeniable romance
The endlessness of the sea offers an eternal alternative. Perhaps if we just pushed off into it, we could escape death itself – as if its amniotic waters might be a return to a universal womb. After all, the sea is where we came from in the first place. There’s a definite romance to saying goodbye to the land, and setting sail for that last adventure.
Van and Carl Vollmer, 85-year-old twins from Brooklyn, certainly think so. The brothers are about to embark on the handsome 158ft, three-masted barquentine, the Peacemaker, on a round-the-world voyage in search of remote islands and sunken galleons, from the Panama Canal to the Great Barrier Reef, the Philippines, and on to the Mediterranean.
In order to get there, the pair – who currently live on a powerboat moored on City Island – have bill-posted Brooklyn’s hipster district of Williamsburg with an enticing proposition: “Brooklyn sea captain seeking crew!” They’re advertising for a 12-strong, able-bodied crew of men and women, including a mechanic, deckhand, cook, nutritionist and an aquaponic gardener to grow vegetables on top of fish tanks – a kind of hip 21st-century version of Ahab’s crew on the Pequod in Herman Melville’s Moby-Dick. They’ll even get suitably retro uniforms of old-fashioned sailor pants with 13 buttons and yellow-and-white striped shirts. I’m guessing they’ll all have beards already.
But instead of a demented captain suicidally spearing a great white whale, the Vollmer twins are instructing their shipmates that when the time comes, they’ll be glad to go over the side. “To swim with the fishes for eternity”, as Van Vollmer says. “We want to spend the rest of our lives on this boat”, Carl adds. “We want to get thrown overboard”. Melville, who lived and died by the New York waterfront, would approve of such wild ambition. Having ended his own life as an ageing customs inspector on the Manhattan wharves looking out longingly to sea, the great writer probably wished he had done the same. Indeed, it’s a scene reminiscent of his last, elegiac seafaring tale, Billy Budd, whose protagonist ends up consigned to the deep: “…roll me over fair! / I am sleepy, and the oozy weeds about me twist.”
But not everyone is happy about the Vollmers’ intentions. At least one crew member, Steven, chosen by the twins as their first mate, is equivocal about this duty. “Van kind of brings it up and he’s like, ‘I want to teach you everything I know so when you dump me into the sea you can take over.’ I’m hoping that’s just some kind of expression. It’s not something I really want to think about.”
Not going gently into the good night but raging against the dying of the light, as Dylan Thomas recommended, has a long maritime tradition. It is an ambition peculiarly suited to the sea – particularly in our fractured archipelago of the British Isles. In Charles Dickens’s David Copperfield, Mr Peggotty, the Yarmouth fisherman, says of his brother-in-law Mr Barkis as he lies dying: “People can’t die, along the coast … except when the tide’s pretty nigh out … He’s going out with the tide. It’s ebb at half-arter three, slack water half-an-hour. If he lives till it turns, he’ll hold his own till past the flood, and go out with the next tide.” Nowadays, anyone hoping to swim with the fishes in eternity without going to the bother of sailing into the blue yonder can opt for burial at sea off the Isle of Wight, in a designated zone.
Meanwhile, the modern Odysseus takes to the ocean liner. Wealthy wanderers of a certain age have sold up on land to live at sea in permanently rented suites. A somewhat ominous-sounding company called Utopia caters to those who intend to spend the rest of their lives on the briny, while US websites discuss the practicalities, pondering, “Is cruise ship retirement cheaper than assisted living?”.
Beatrice Muller thought so. After her husband died on the QE2 as it sailed out of Bombay in 1999, she announced her intention to live on the liner till the end of her days, paying £3,500 a month for the privilege. Unfortunately for Mrs Muller, she outlasted the ship; it went into retirement in 2008. And although the stalwart senior citizen continued to defy the land – “I’ll keep on staying at sea”, she said, aged 89, “I don’t want to go back to housekeeping” – sadly, she seems to have ended up in a retirement home in New Jersey.
As someone who swims in the sea every day, I’ve often considered it as my last resting place; that like Barkis, I might be taken out with the tide. After all, I wouldn’t be using up valuable land space, or contributing to climate change. It sounds almost idyllic. “Full fathom five my father lies”, as Ariel sings in The Tempest, “Of his bones are coral made”, transformed “into something rich and strange”. But then I think of how lonely it might be, nibbled away by crawling slimy things where “the very deep did rot”, as the fated Ancient Mariner saw it. And would I really want to be recycled by lobsters, to end up in the food chain? Perhaps it’s not such a reassuring thought after all.