Plastics manufacturer Nissei Eco introduced Pepper last month, a robe-donning robot trained to recite prayers and scripture while tapping a little drum.
[I]n Japan, where funerals often require elaborate preparation and involve religious rites, honoring the deceased comes at a very steep price. It costs about 550,000 yen (~$5,030) just to hire the services of a Buddhist monk, whose duties include chanting sutras. But now families have a more economical option to stand in place of these religious men: a robe-donning robot named Pepper who’s been trained to recite prayers and scripture while tapping a little drum. It can even livestream ceremonies to loved ones unable to attend a funeral in person.
Plastics manufacturer Nissei Eco introduced Pepper last month at Tokyo’s annual Life Ending Industry Expo — Japan’s largest trade show for everything funeral-related — and intends to offer its services at a cost of 50,000 yen (~$460), according to Japan Times. It’s an incredibly niche and unusual position for the four-foot-tall bot, which was originally designed by SoftBank Robotics as the first humanoid robot to live with humans, and the first capable of perceiving and responding to our emotions. Other Peppers have found homes in hospitals, where they work as receptionists, and in banks, where they greet and assist patrons. As Hyperallergic’s Allison Meier experienced first-hand, this little android is quite capable of displaying empathy.
Nissei Eco started tinkering with Pepper a year ago. A company spokesperson told Japan Times that its repurposed bot is part of a larger effort to innovate the funeral industry, as customers increasingly seek alternatives to traditional rituals. The robo-monk may also serve as a substitute to human priests when they aren’t available. As Nissei’s executive advisor Michio Inamura explains in the video below, priests are increasingly seeking part-time work outside their temple duties as donations from families affiliated with temples are in decline.
“So we thought that Pepper could fill that role of worship,” he concludes. Buddhist monk Tetsugi Matsuo, however, questions whether the smiling machine can offer guidance that is spiritual at heart, rather than simply replicate the physical demands of these age-old duties. Pepper the Buddhist monk’s computerized voice, for instance, may not carry the emotion that some people may seek. And some will perhaps see the machine as an undignified presence at a service steeped in tradition. Pepper, however, has yet to administer its first official funeral, so we’ll have to wait and see if it manages to fill such esteemed roles while maintaining a room’s expected decorum.
Everyone should have the right to high-quality palliative care when they have a terminal illness, regardless of their condition, where they live, or their personal circumstances. It’s commonly assumed that everyone with a terminal illness gets the care they need, however one in four people who need palliative care in Northern Ireland are not currently accessing it.
by Craig Harrison
Raising awareness of the issues
The problem can be particularly acute within the LGBT community, and last year, research commissioned by Marie Curie found that concerns around discrimination, stigma and invisibility can often cause LGBT people to access services late or not at all.
To explore these crucial issues, Marie Curie Northern Ireland held a policy seminar to raise awareness of the barriers faced by our LGBT community in accessing end of life care and what can be done to address them.
Held in Stormont, the home of the Northern Ireland Assembly, the event brought together a wide range of stakeholder groups, departmental officials, MLAs and health and social care representatives.
oan McEwan, Head of Policy and Public Affairs at Marie Curie Northern Ireland spoke about the need for LGBT people to be able to access care, free from discrimination.
Championing compassion and understanding
Guests heard from Joan McEwan, Head of Policy and Public Affairs at Marie Curie Northern Ireland, as well as John O’Doherty, Director of local LGBT organisation the Rainbow Project . John discussed the needs of older LGBT people in health and social care, and said:
“Accessing care as an older person is something many of us do not consider we will need until it is upon us – particularly end of life care. This is a difficult time for everyone, but for many LGBT people, fears of homophobia and invisibility exacerbate an already distressing and difficult time.
“Ensuring services are accessible, safe and considerate of the specific needs of LGBT people means understanding their experiences, particularly the impact of homophobia, transphobia and marginalisation throughout their life.
“Marie Curie’s work in end of life care for LGBT people is imperative to ensuring that everyone living with terminal illness in our society can access care and support that is underpinned by compassion and understanding.”
Dr Richard O’Leary spoke about the experiences of he and his partner, Mervyn, when Mervyn was in hospital toward the end of his life.
“The assumption that we were not a couple”
Guests also heard from Dr Richard O’Leary, a retired university lecturer who was a full-time carer for his late partner Mervyn. Richard said:
“When we came to access end of life care as a same sex couple we were fearful of what we might encounter from service providers.
“My civil partner Mervyn was admitted to hospital many times and the assumption that we were not a couple was made at least once during every hospital stay. In the public ward in hospitals I was wary of showing affection to Mervyn because it was unclear whether the hospitals had a protocol to protect us if anyone objected to us being affectionate.
“In hospitals and hospices much of the emotional care of the dying is offloaded to the chaplaincy service. This can be problematic – with one chaplain telling me that they were ‘struggling with the issue’ of same sex relationships.
“Mervyn and I enjoyed 25 years of a committed, loving relationship until he died on 2 August 2013. After Mervyn’s death, there were people in my family and in my faith community who explicitly withheld from me the expression of condolence.
“Service providers should be aware of the disenfranchised grief and reduced social support that may be experienced by LGBT persons during bereavement. I’d like to thank Marie Curie for their pioneering research and leadership in the area of end of life care for LGBT people.”
Making good practice more widespread
The presentations made clear that there are pockets of good practice in end of life care provision for the LGBT community. Service providers and HSC professionals must now work together to take these examples and make them universal – to ensure LGBT people receive high-quality, person-centred care that acknowledges and supports them during terminal illness.
Dr Richard O’Leary, Melanie Legg, Joan McEwan, Mark H Durkan and John O’Doherty at the event on 7 September 2017.
[T]he death educator will be giving informational and interactive talks from 6 to 8 p.m. Tuesday, Sept. 19, and 1 to 3 p.m. Wednesday, Sept. 27. Both talks will be the same so interested people should attend one or the other, Wagner said.
Wagner, a new Anacortes resident, has been working on death and bereavement counseling for years. In the 1970s, he was living in San Francisco and saw many of his friends sick and dying from AIDS.
Wagner, who was an ordained Catholic minister, looked into his background in theology and therapy and tried to find a way to help people who were dying or losing loved ones.
The people he was sitting with were dying in a matter of weeks, and he felt like he was just moving from one death scene to the next.
People were having to just figure out death on their own, he said. So he decided to set out to help people understand death as a part of life, rather than a punishment or something to be feared.
People who are aware of their mortality are able to live better lives, Wagner said. Talking about it in a group format also means people don’t have to deal with it alone.
Wagner started a support group as part of a 10-week program. People of all different backgrounds came in to talk and learn, he said. The program featured guest speakers to talk about spiritual concerns, legal concerns, estate planning and more.
The talks he’s offering in Anacortes are a condensed version of that program, which he also outlines in his book “The Amateur’s Guide to Death and Dying.”
His program ran for several years but he put it into book form to reach more people.
The book is set up as a support group, with fictional people talking about issues. All should be able to relate to what is being said, Wagner said.
“There is a place for them to fill in their own thoughts,” he said.
Death is not something people should be told how to feel about, he said. He just wants to open the discussion and give people the tools they need to be ready.
“Death is inevitable,” he said. “We have the opportunity to prepare.”
The talk at the center is aimed at elderly people and their family members. It will be fun, with a lot of humor involved, Wagner said.
[T]he emotion of grief may be triggered by the loss of a loved one or the result of a life circumstance. Many people believe that if you have effectively mourned a loss you will then achieve closure. The notion that one mourns a loss and then gets over it, to the extent that emotions about the loss are not triggered in the future, is a myth.
Similarly, children have such expectations about getting over loss. They seem to believe that one needs to do something in particular in order to achieve that goal. Several years ago, as host of a radio talk show for kids, I asked listeners about the issue of loss. An 8-year old boy told me that his grandfather had died two weeks before and he wanted to know how to get over it-he thinks about him all the time and can’t concentrate on anything else. A 12-year old boy explained that his dog had died and he wanted to know what to do since he couldn’t say good-bye to her and didn’t think that he could ever “fill [his] heart with anything else.” I didn’t ask what he meant by his choice of words, however, I felt its meaning. A 13-year old girl said that she asks her brother about what clothes look good on her because she doesn’t have a mom, and it always feels like something is missing. She asked, “How do I get over my mom dying?”
The misguided notion that grief is a process that allows a final working through of a loss is likely the fault of my own profession–mental health professionals who have promoted this notion in their work with grieving individuals. Clinical data makes it clear that any significant loss, later and repeatedly, brings up longing and sadness. Is it because these people have not achieved closure by traversing prescribed stages of mourning or because they have not “worked through the loss” as some therapists boldly claim? No. It’s because you never get over loss. As time passes, the intensity of feelings about the loss will lessen, you might also find ways to sooth or distract yourself, or you can partially bury grief-related feelings by creating new memories. But you’re not going to get over it because that’s impossible: you cannot erase emotional memory. Besides, it’s not about achieving closure. Instead you have to figure out what you are going to do when your emotional memories are later triggered.
Emotions that have to do with loss are triggered throughout our lives. Usually they are in the form of anniversary reactions, such as the birthday or death day of the lost loved one or any significant holiday in which you might want to be with the person who is gone. Reminders, such as visiting a place you’ve been with the person you lost, will trigger a similar response. Episodes of depression or anxiety that seem to come from nowhere may have been activated by anniversary reactions or situation-matching reactions.
Grief can also be triggered by an age-matching anniversary reaction, which is when a person’s age matches the age of a parent or loved one when they died. The remarkable power of age-matching anniversary reactions arising from the loss of a parent in childhood was demonstrated to me when I began training as a psychologist nearly 40 years ago. I had been treating a severely depressed man who, for many months, was not responsive to intensive psychotherapy or medication. Upon discovering with the patient that his depression began at a time in which his age matched his father’s age of death, the depression miraculously lifted. Beneath his depression lay a myriad of fears that he would be like his father, which included dying at the same age of his father as well as guilt that he was not like his father and could live a full life. Although he had been unaware of the age factor, his painful feelings seemed to recreate the trauma of his father’s death, which was too overwhelming for him to feel when he was ten years old.
One of the reasons that grief happens to be triggered by external reminders, such as in anniversary reactions, is because grief is an emotion that sends a vague alert to help you to remember, rather than to forget. Even so, what most people do with grief is attempt to forget–to get over it–which is quite contrary to the purpose of the emotion. Rather than try to forget, one must attempt to remember and accept what the emotion is trying to convey. There are many ways to remember. You can remember what you learned from the person you lost, remember what you enjoyed, and you can cry if you feel like crying. Even if your grief is about a relationship gone bad, there is always something that you can learn through recollection.
There are related themes of loss that people express, and later grief responses related to those losses, such as the many women and men who have given up a child for adoption. The child’s birth date does not pass by without an emotional reaction, whether or not they recognize it at the time. Similarly, the date a child would have been born for a childless woman who has had a miscarriage can trigger grief. The experience of loss when a relationship ends can be triggered on the former partner’s birthday, on the anniversary of when you met, or on any holiday.
Whenever I am bothered by the thought of just how misguided the notion of stages of grieving can be, I remember one patient in particular who wanted help with the depression she had every summer, which at the time she told me was when her 12-year old child had died 25 years before. She sought therapy because she was convinced that something was wrong with her. Every June, for 25 years, she had experienced a grief response. Simply knowing that she wasn’t crazy because of the intense emotions she felt made it a bit easier the next time June arrived. Rather than try to get rid of her painful feelings at the time, instead she learned to think about exactly what she would do to remember her son.
Henry Wadsworth Longfellow sums up the lifelong experience of grief in the first 3 lines of his poem, Secret Anniversaries Of The Heart:
The holiest of all holidays are those
Kept by ourselves in silence and apart;
The secret anniversaries of the heart.
[N]obody likes to think about lying on their death bed. From health anxiety to midlife crises, it seems like thoughts about ageing and death can often unleash some level of neurosis. But is that the whole story? We have examined mortality awareness – the realisation that we are all one day going to die – and found that, although the prospect of death is often scary, it can also have positive effects.
Perhaps unsurprisingly, research on death awareness so far has focused largely on the negative aspects of realising that we will eventually stop living. Indeed, until now, the dominant psychological theory has been “terror management theory”, which assumes that contemplating our demise invokes fear and anxiety. For example, studies using this framework have found that thinking about death can make us more punitive and prejudiced.
However, throughout the years, literature from various fields has offered other explanations. For example, “positive psychology” proposes concepts such as “post-traumatic growth” – the idea that people can grow psychologically through traumatic experiences. Thinking about the fact that we will die may be hard, but according to this theory it could also help us to get stronger psychologically.
In our recent study, published in OMEGA – Journal of Death and Dying, we asked 356 participants from 18 to 80 years old questions about their experience of mortality. We asked them to indicate the extent to which they agreed with 89 statements which covered a wide variety of possible attitudes to death awareness. These included “I do not let the fear of dying rule my life”, “I want to be remembered for doing great things for the world when I am no longer alive” and “I am scared of dying before I am old”. In this way, we explored how many aspects of such awareness we could identify.
To see how the results might align with positive or negative features of their experience, we also asked our respondents about how interested they were in their health, how prone to taking risks they were, and how eager they were to conform (such as obeying rules).
Some of the attitudes we identified were negative. These included being fearful, feeling disempowered (realising personal vulnerability in the face of death), and feeling disengaged (refusing to acknowledge death). We found that those people who reported higher levels of disempowerment and disengagement also reported taking more risks and were more reluctant to conform. It may be that people who report taking greater risks do so because they feel that they will die regardless of what they do. Those refusing to conform on the other hand may be attempting to empower themselves in the face of the inevitable.
We also discovered that younger individuals and people with lower levels of education attainment were more likely to have negative attitudes to death. However, it is not all bad news for these individuals. For example, we found there was a relationship between mortality fearfulness and placing a high value on staying healthy. So it would appear that fearing death may cue attempts to control its unpredictability.
The power of legacy
Interestingly, we also found a few positive aspects of pondering mortality. One is accepting it rather than running away or fearing it, which can help us to make the most of our time-limited existence.
We also identified what we call mortality legacy awareness. This is a form of mortality awareness that drives the need to leave something behind after we have gone – thereby outliving and transcending death. This could be a highly creative force.
Having children can make us feel better about ageing and death.
The need for a legacy turned out to be an important contributor to dealing effectively with the prospect of demise, lessening feelings of hopelessness and a lack of purpose. In the study, legacy awareness was found to be correlated with both trying to be healthy and striving for spiritual growth (such as believing that life has purpose).
This suggests that those who are interested in passing down their succession to future generations as a way to transcend death are also likely to take responsibility for their health and place value on their internal development. Artists are the perfect example of this: through their creative legacies, they live on and are never totally gone. Working on leaving a legacy – whether it be producing art, raising a family, passing on family history or helping others – can also be a way for people to better tolerate ageing and face the prospect of death.
Such legacies also help those who remain to cope with their loss. On a more basic level, being aware of our ability to provide a legacy that outlives us can be an excellent way to motivate ourselves to accomplish more, stay healthy, focus on the here and now, and maintain good relationships.
Of course, the results are all based on correlations – we don’t show conclusively that striving for a legacy actually does make people feel more fulfilled. Our latest research project (currently under peer review for publication) has therefore studied 10 people’s experience of mortality awareness in depth – through one-to-one interviews. The outcomes of this work confirmed the findings from our first study and offer additional support to the claim that legacy awareness is a major element in people’s search for meaning – helping to manage death-related anxiety.
So the next time you face a haunting reminder of your death, remember that focusing on what you would like to leave behind could help you turn something terrifying into a positive motivational tool.
[A]ccording to the2017-2018 National Pet Owners Survey, 68 percent of U.S. households, or about 85 million families, own a pet. For many, these animals are not just companions, but beloved family members. From providing comfort in times of trouble to greeting us at the front door, it’s hard to imagine life without their unconditional love.
Nevertheless, whether you’re the proud owner of a miniature box turtle or mammoth Irish Wolfhound, owners have an obligation to ensure that their four legged friends are cared for when they’re no longer around.
But Erach F. Screwvala, an estate-planning attorney with Screwvala LLC, says that he’s noticed a rising trend in asset base management: unusualpet provisions.
Recently, one NYC woman made headlines when she left $300,000 of her $3 million estate to her two cats. The Manhattan lawyer says that though it’s not uncommon to see vast sums allocated to furry friends, you don’t need to allot such sky high funds for adequate care.
“Amounts higher than this are more common in the celebrity world – for example, Oprah Winfrey supposedly has put aside $30 million for her dogs in her will,” Screwvala said. “If such large bequests are desired, it is critical to provide for distribution of any excess amounts after the death of the pets to avoid burdensome probate proceedings to distribute any remaining money.”
In outlining pet provisions for a well-crafted estate plan, Screwvala suggests taking one of three routes: listing a beneficiary, establishing a pet trust, or finding a trustworthy organization to look after your sweet Fluffy or Fido.
First, a beneficiary will inherit your pet when you pass away; preferably, you can leave them money to provide for the animal. Next, if you desire more control, a pet trust, ideally as part of a revocable living trust, is recommended. While this plan is more expensive to set up, it provides certainty that the pet will be cared for precisely how you want, Screwvala said. It is critical to provide sufficient funds for a pet trust, so that the trustee has ample funds to execute your wishes. This is particularly true with animals that have longer life expectancies, like horses, he adds.
Lastly, finding a specialized animal care organization is a viable option to leave your furry friend in good hands. Make sure that you make arrangements in advance, as many groups will have specific guidelines, Screwvala notes. In his years as an estate planning attorney, Screwvala has encountered many bizarre requests for pet provisions.
“One that really sticks out in my mind was when I was asked to include a diamond dog collar and walking leash. Although, this was a rather peculiar request, it was definitely a wise move, as you can imagine a genuine diamond collar is incredibly valuable!” he said. “However, if the dog collar was encrusted with laboratory grown diamonds I would advise against because synthetic diamonds are of no inherent value.”
Additional requests have included a wardrobe of designer animal outfits and provisions for a custom-made wooden casket for a cat, Screwvala said. While such specific requests certainly gave the owners of those animals peace of mind, establishing your estate plan with straightforward pet provisions is beneficial to all.
“The most important thing people should leave is enough money to ensure that their pet is properly cared for after they pass away,” Screwvala said. He suggests avoiding overtly ridiculous food provisions (filet mignon steak only!) or anything else that might be difficult for the caretaker to fulfill.
Ultimately, one of the smartest moves you can make is connecting with an experienced estate planning attorney who understands your local laws, Screwvala says. This expertise is critical: in some states, provisions for pet care in wills are honorary, meaning that they can be ignored by your heirs.
“They don’t need $300,000, but a loving caretaker, regular veterinarian care, and a couple square meals a day will do wonders!” he said.
Biff Flanagan, an esophogeal cancer patient, stands with his wife Patricia at their home in Sa Diego, CA on Wednesday, August 30, 2017. Mr.Flanagan received an experimental immuotherapy cancer treatment for his cancer.
[A] new generation of immune-boosting therapies has been hailed as nothing short of revolutionary, shrinking tumors and extending lives. When late-stage cancer patients run out of other options, some doctors are increasingly nudging them to give immunotherapy a try.
But that advice is now coming with unintended consequences. Doctors who counsel immunotherapy, experts say, are postponing conversations about palliative care and end-of-life wishes with their patients — sometimes, until it’s too late.
“In the oncology community, there’s this concept of ‘no one should die without a dose of immunotherapy,’” said Dr. Eric Roeland, an oncologist and palliative care specialist at University of California, San Diego. “And it’s almost in lieu of having discussions about advance-care planning, so they’re kicking the can down the street.”
Palliative care and oncology teams have long been wary of each another. For many oncologists, palliative care teams are the specialists to call in only when curative treatments have been exhausted. For many palliative care specialists, oncologists are the doctors who prescribe treatments without regard to quality-of-life considerations.
But the new collision between immunotherapy and palliative care experts comes at an inopportune moment for health care providers, who have in recent years promoted palliative care as a way to increase patient satisfaction while reducing costs associated with hospitalizations and emergency room visits.
Dr. Cardinale Smith, an oncologist and palliative care specialist at Mount Sinai Hospital in New York, said she has seen a handful of patients who tried immunotherapy treatments after failing chemotherapy, and who were later admitted to the hospital in poor condition. Almost all of them died there, without having been asked about where, and under what conditions, they might prefer to die.
“These conversations are not occurring because of the hope that this will be the miracle treatment,” Smith said. “Unfortunately, on the part of the oncologist, treatments like immunotherapy have become our new Hail Mary.”
Immunotherapies work for only around 15 to 20 percent of cancer patients who receive them.
They have been approved by the Food and Drug Administration for Hodgkin lymphoma and certain cancers of the lung, skin, blood, kidney, bladder, and head and neck — but not for common cancers like prostates and most cancers of the colon and breast. A new type of immunotherapy, CAR-T, was approved earlier this week for leukemia.
But even for those cancers, oncologists and patients sometimes refuse to acknowledge clear signs that immunotherapies are failing, said Dr. Sandip Patel, a cancer specialist and immunotherapy researcher at the University of California, San Diego.
Patel said he now engages home-based palliative care specialists, who can provide supportive care while a patient’s health is relatively stable. “Then, at least when they transition to hospice, it’s not as much of a free fall out of the traditional health system, and if they’re one of the patients who respond to the therapy, great.”
He lamented the fact that patients who fail immunotherapy treatments spend more time in hospitals than with their families at home. “The flip side is, if I had a cancer with a 15 percent response rate, and if the benefit might be longer-term, I’d try it,” he said. “Who wouldn’t buy a ticket to a lottery of that importance?”
But not all patients have a clear idea of what that lottery ticket might cost them. Carrie Clemons’s father, Billy Clemons, who is 68 and is a former Texas state representative, last year stopped responding to chemotherapy for renal cell cancer that first struck him in 2002. His doctors recommended the immunotherapy Opdivo, which had recently been approved for his cancer.
At the time, he was symptom-free from his cancer, though scans showed it had spread to his lungs and some lymph nodes.
Two infusions of the drug, Clemons said, were followed by “eight months of hell,” during which her father became incontinent and had to use a wheelchair, lost his eyesight and most of his hearing and speech, and endured multiple weeks of intubation and care in the ICU. When his heart stopped beating, he needed to be resuscitated.
While immunotherapies trigger debilitating side effects much less frequently than chemotherapy, they can spur potentially life-threatening conditions, depending on the cancer type and the treatment approach. Fewer than 5 percent of patients overall face serious side effects, for instance, but more than one-third of melanoma patients who receive a combination of immunotherapy drugs can experience such conditions. The upside: Half of those melanoma patients will see their cancer shrink for at least two years.
Clemons’s doctors at Houston’s MD Anderson attributed the reaction to a runaway immune system that essentially attacked his central nervous system. To reverse it, he needed weeks of therapy to replace his plasma with that of donors, to clear away his blood’s overly active antibodies.
He slowly improved, though, to the point where only some slight vision impairment remains, and doctors recently declared his cancer in remission.
Although the family is thrilled at the outcome, Clemons said, they had little idea when they began that such side effects were possible, and doctors never engaged the palliative care team to either discuss side effects or help manage them.
She wouldn’t have known to ask about such care. “I always just equated palliative care with hospice,” she said.
Hospitals overall have made some headway in integrating oncology and palliative care specialists, with more oncologists referring patients to palliative specialists to help them ease side effects of treatments and achieve quality-of-life goals.But Roeland, the doctor at the University of California, and others say the integration is less smooth when it comes to cutting-edge cancer treatments.
Palliative care teams have not been able to keep abreast of the breakneck pace of cancer treatments, so they may not be offering up-to-date counsel to patients who ask about possibly life-changing therapies.
Meanwhile, most of the growth in palliative care medicine has happened among clinicians who work in hospitals, where they generally see only those who have done poorly on immunotherapies, for instance.
“They’re not seeing the super-responders,” Roeland said. “So their first reaction usually is, ‘Why would you do that?’”
Biff Flanagan, an esophogeal cancer patient, on a walk with his wife Patricia at their home in San Diego, CA on Wednesday, August 30, 2017. Mr.Flanagan received an experimental immuotherapy cancer treatment for his cancer.
Roeland understands more than most the seductive qualities of an eleventh-hour immunotherapy gambit. He had given up hope of curing Bernard “Biff” Flanagan, 78, of his esophageal cancer in late 2015, and referred Flanagan to hospice care to help him manage his extreme weight loss, fatigue, and the emotional distress he felt from not being able to swallow.
But Flanagan, who speaks with the gruff, seen-it-all humor one might expect from a career FBI agent in LA, wanted to keep seeking a cure.
Roeland said he knew that many hundreds of clinical trials were testing the therapies on other cancers, so he did some digging. A paper from a recent cancer conference showed that some people with squamous cell esophageal cancer responded to immunotherapy. He could arrange to get the drug through the Bristol Myers Squibb, for free.
He presented the idea to Flanagan and his wife, Patricia, with the caveats that it might not work, and could come with possibly significant side effects.
Flanagan jumped at the chance. Patricia, a former professional photographer, was less enthused.
“I ran into her later in the coffee shop,” Roeland said. “She looked at me like. ‘What the hell are we doing here? He doesn’t have a good quality of life.’ I’m feeling guilty now.”
Roughly six weeks into the treatment, Flanagan’s energy was returning, and he found himself at the fridge. “I grabbed a glass of OJ, knocked it down, swallowed it no problem,” he said. “And it was like a miracle. I had another one.”
Now Flanagan has no symptoms, and he experienced only the briefest side effect: a skin rash that abated with ointment. Patricia recently helped him dispose of the morphine and other medications the hospice team had given them.
“If he’d died in the hospital, I would’ve felt terrible,” she said. “If I were in his place at that point, I’d have tried to arrange to die at home at my own choosing, but Biff just didn’t have as strong feelings about that as I had.
“I had little hope that he was going to recover, but it’s just been amazing. He really is living the life he’s always lived.”
Roeland said that for the experience “is so immensely rewarding that it drives an oncology practice. It can be 1 in 100 that happens like that, and you say, well, is it worth it?”
