Hospices nationwide have leveraged technological advances to improve workflows, referral communications and enhance patient care. While telehealth in particular has been vital for hospices to continue reaching vulnerable high-risk patient populations during the COVID-19 pandemic, providers must proceed with caution when it comes to technology and patient care.
Prior to the pandemic, technology in the hospice industry was evolving, with systems such as predictive analytics, telemedicine, artificial intelligence and virtual reality gradually changing the end-of-life care landscape.
“We have obviously seen an increase in the use of telehealth, and the word of caution there is we want to make sure we learn from this pandemic and accelerate some of that move,” said Edo Banach, president and CEO of National Hospice and Palliative Care Organization (NHPCO) in a recent Netsmart webinar. “We have to make sure that we use technology appropriately, but not to replace the human touch that is the sweet spot of hospice and palliative care organizations.”
NHPCO has been among the advocates in the hospice and palliative spaces calling for regulatory reform as telehealth pushes forward during the coronavirus pandemic. In August the U.S. Centers for Medicare & Medicaid Services (CMS) announced that it would make permanent a number of the temporary flexibilities to expand telehealth that the agency implemented in response to the pandemic, though of rules extended that will affect hospices remains uncertain. Concerns have flooded both the hospice and palliative care fields as providers strain to navigate uncertain technological reimbursement opportunities ahead.
“Importantly, we have to make sure that hospices and palliative care programs are compensated for the technology,” Banach said. “They are nowhere near as compensated as hospitals and other institutions when it comes to technology. That’s something that needs to improve. It’s really going to be important for individuals to have access to the technology that they need to get care in the home and for the clinicians to similarly have that same access and support. This is going to include technology for the delivery of meals and for the delivery of pharmaceuticals, technology that enables vital signs to be taken, technology that allows individuals to stay connected. The investment there is really massive. Billions of dollars of investment have gone into interoperability and state changes.”
Investing deeper in technology comes with considerations of data analysis and relationship-building capabilities as hospices look ahead to a value-based payment environment. Enhancing data analysis will be key for hospices looking to demonstrate their value proposition to Medicare Advantage plans in anticipation of the hospice carve-in coming in 2021. Designed to improve continuity of care and increase coordination among providers, the ability to reach patients sooner through interdisciplinary partnerships is another potential benefit from expanded technology use.
“The most important thing is diversification. If there is an opportunity to provide person-centered interdisciplinary care under contract with different kinds of entities, that’s going to be really important for hospices to establish those relationships to acquire the technology that’s necessary to take risk and really to begin, or to continue to live, in this sort of new value-based world because at some point, it’s going to be all that’s left — for better or worse. It’s really important that if you’re not in that space, to get in that space and to diversify as much as possible. Those who do that will be quite successful,” Banach said.
It was a decision Mika Newton had been dreading, but he knew he needed to stop seeing his mom.
For nearly three years, Newton, an entrepreneur in cancer care advocacy and patient support with his startup xCures, had been taking care of his 79-year-old mother, Raija, who lives near him in Oakland, Calif. When his father passed away, Newton took over caregiving duties for Raija, who suffers from mid-stage dementia and was recently diagnosed with terminal lymphoma. As the coronavirus pandemic exploded in March, Newton’s wife, Nuray, a nurse at Concord Medical Center at John Muir Health, was treating the sudden influx of COVID-19 patients. That meant a halt in Newton’s daily visits to his mom to protect her from any virus transmission.
“I wasn’t able to see her for eight weeks which was hard. But we spoke on the phone every day and I had peace of mind she wouldn’t die alone, because we have full-time home care and hospice for her,” said Newton.
Hospice in the Time of Coronavirus
According to a 2019 National Hospice and Palliative Care Organization report, nearly 1.5 million Medicare beneficiaries currently receive hospice care, defined as compassionate care that replaces treatment for patients who have a terminal condition with less than six months of life expectancy.
However, a National Association for Home Care & Hospice (NAHC) survey conducted in May 2020 found that 95% of hospice agencies have had existing patients refuse visits due to fears of contracting the virus And while two-thirds of hospice agencies are taking COVID-positive patients, they have lost overall clientele, forcing them to reduce direct-care staff. Some staff concerned about their own health and their families’ health are reluctant or even refusing to help any COVID-confirmed patients.
“The agency said they couldn’t risk staff getting the virus and having to be quarantined and out of commission. That was a blow.”
Rebecca Bryan, a journalist for Agence France-Presse based in Los Angeles, realized that hospice care can be a blessing when her father spent eight months in hospice in 2004. But things were different when her 89-year-old mother, Margie, needed hospice before passing away during the pandemic.
“Hospice is a wonderful program, but I never realized how hands on my mom must have been for my dad since I was only home the last month of his life,” said Bryan.
When her mother was recently diagnosed with late stage leukemia and given three to six months to live, Bryan spent two months in Dallas caring for her.
“Mom made a decision not to proceed with blood transfusions, so we secured hospice care for her at home,” Bryan said. But while the small agency in Dallas helped deliver a hospital bed and did an initial inspection, it refused to send any staff to Bryan’s mom’s home when she showed an elevated temperature.
“She had just tested negative for COVID in the hospital and because of her cancer, she had not been outside. She was only at home alone but the agency said they couldn’t risk staff getting the virus and having to be quarantined and out of commission. That was a blow,.” said Bryan.
Bryan said she and her sister learned how to turn her mom to avoid bed sores, put on adult diapers, administer morphine and other paraprofessional caregiving tasks without any instruction.
“That was hard, I wish we had more guidance, because you are constantly asking yourself, ‘Am I doing this right?’” said Bryan.
Hospice Telehealth
Robin Fiorelli, senior director of bereavement and volunteer services for VITAS Healthcare, a provider of end-of-life care, believes in-person hospice care can never really be replaced but that telehealth has become a solution to some hospice challenges during COVID-19.
“We can conduct a virtual tour of a home hospice patient’s living area so our nurses can assess whether a hospital bed, walker, patient lift or bedside commode should be delivered to the home,” said Fiorelli.
“COVID has magnified the strain on family caregivers, there is no relief.”
She also added that face-to-face conversations about goals of care are being replaced by video chats in which physicians, patients and family members explore care-related wishes and document difficult-but-necessary decisions about ventilation, do-not-resuscitate orders and comfort-focused care. This proves especially valuable for family members who live far away from the patient and who can be part of those conversations remotely.
The Centers for Medicare and Medicaid Services (CMS) has waived certain requirements for hospice care at home due to the pandemic, such as allowing health care professionals to recertify patients for another six months of hospice care via a telehospice visit, foregoing the mandatory two-week supervisory visit for home health aides and waiving the mandatory hospice volunteer hours, which normally have to meet 5% of total hospice hours delivered.
“COVID has magnified the strain on family caregivers. There is no relief,” said Vic Mazmanian, a dementia care expert who operates Mind Heart Soul Ministry to train faith-based organizations, provide support group services for senior centers and memory care communities and work with hospice chaplains.
“Not being able to take a loved one to adult day care or a senior center so you can get a break is accelerating the stress and impacting the health of caregivers,” said Mazmanian. “The 24/7 nature of hospice care, with most, if not all, the work being done by the family member without help from professionals or volunteers, is being derailed by the pandemic with many caregivers feeling increased anxiety, depression and loneliness.”
From Grief to Gratitude
Mika Newton feels he’s been lucky. In addition to the daily home care for his mom, hospice workers come three times a week. But now that he has resumed his visits, he realizes the stress of not seeing her regularly like before has taken its toll on both of them.
“She’ll ask me why I’m wearing a mask and get angry about it because she doesn’t remember what is happening in the outside world,” said Newton. “Or she’ll forget she has cancer and I have to remind her. I realized the cancer may be killing her, but the dementia is slowly taking her soul.”
Rebecca Bryan advises family caregivers facing hospice for a loved one to ask a lot of questions such as, “If my loved one tests positive for COVID or has one of the virus symptoms, does that affect your ability to come care for them?”
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“In the beginning of the pandemic, many of our patients and their families did not want our professional staff coming into the home. But that has eased up more recently,” said Dr. Kai Romero, chief medical officer for Hospice By the Bay, affiliated with UCSF Health in San Francisco. “We’re proud that throughout this entire experience we have continued to provide needed end-of-life care to everyone on our service and we’ve kept our direct care workers safe with strict testing, PPE and other guidelines. Not one of our staff has tested positive for COVID-19, even though we have had twenty-seven patients who have had the virus.”
COVID-19 Sparks ‘The Talk’ For Families
When Next Avenue asked readers on our Facebook page how the pandemic has affected care for their loved ones, one shared that she recently lost her mom after home hospice care and worked hard to make sure COVID-19 wouldn’t be part of the end of her life.
“Eighty percent of people don’t make a will or have the family conversation about long-term care because they are afraid if they do, they will die,” said Scott Smith, author of “When Someone Dies — The Practical Guide to the Logistics of Death.” Smith, who is CEO of Viant Capital and sits on a hospice board, advises families to have “The Thanksgiving Talk” where older family members share not just their wishes but where all the important legal and financial documentation can be found.
Mika Newton said losing his dad galvanized him and his brother, Timo, to get all his mom’s end-of-life plans settled now, while she’s still alive. “My mom was able to participate in the conversation. which I’m really grateful for. And my dad did a great job making sure she would be OK financially, so it wasn’t a huge burden. I’m glad we went the route with hospice, I feel at peace with it.”
Like so many people, I have spent much of this pandemic grappling with grief. I’ve lost people I love, and even now, people I care about are ill. Even if you haven’t personally lost someone, you’re likely tapped into the collective sense of mourning. It’s hard to know how to comfort people who are dying or the people who love them under any circumstances, but when you can’t be together, it makes it even harder.
That’s where death doulas step in. In case you aren’t familiar with the term, a death doula is like an end of life midwife. They help dying people by guiding them and their families through the dying process. They help people plan out their death experiences. They can aid in navigating the practical parts — like wills and funeral planning, and also the emotional aspects — like helping people figure out what kind of rituals will make grieving cathartic.
Many of the usual ways that dying people and those who love them deal with death — deathbed visits, meetings with spiritual advisors, grief counseling — are not available to us right now. We may not get to have much, if any, contact with a person dying of coronavirus. In this pandemic of mass uncertainty, death doulas can help us through the grieving process.
“Doulas are professionals who provide support and guidance to individuals and their families during transformative life changes,” Ashley Johnson, an Atlanta-based death doula and founder of Loyal Hands, a service that matches people with end-of-life doulas, tells me. These doulas can train family members in some of the practical aspects of caregiving, help people create support plans, and counsel those who are dying and the people who love them, Johnson tells me.
Death doulas are also educators, in a way. Most of us spend a lot of time trying not to think about death, and we aren’t well-versed with the death process. Most of us aren’t even aware that death is a process that can be charted. Death doulas help folks get familiar with the normal and natural stages of dying, Johnson tells me. In the terrifying and confounding moments when grieving people are wondering what happens next and how they can deal with it with dignity, death doulas can step in to fill in the blanks.
There’s kind of a new-age, woo-woo stigma surrounding the work that death doulas do. They aren’t priests and they aren’t psychiatrists, so their professional world is kind of murky spiritual-ish/life coach-ish territory. But some psychologists do think that death doulas can play an important role in helping people cope with grief. “A doula could help people figure out how they want to mourn,” says Aimee Daramus, a Chicago-based psychotherapist.
Daramus adds that people should be mindful that many doulas aren’t trained therapists, but because they are familiar with managing grief so they are generally able to tell when a clinical professional is necessary. For people who are spiritually inclined, but not formally religious, this middle ground can be a comfortable place to mourn without devolving into either over-medicalized melancholy or eccentric science-shunning spiritualism.
“A doula should be able to recognize when someone’s thinking or behavior is starting to go beyond the normal range of mourning experiences.” In this way, death doulas can be a touchstone for figuring out if a person is having a healthy grief response or if they may benefit from another type of help. There is no one right way to grieve, of course, but some people can sink into depression if they don’t process their grief as it’s playing out.
One of the benefits of working with a death doula is that you can shop around to hire someone who fits your needs and understands the cultural specifics of your background. “A professional should work to understand the unique cultural practices relevant to that individual or family,” says Thomas Lindquist, a Pittsburgh-based psychologist and professor at Chatham University. This is especially important, he says, during important life milestones.
A lot of folks in the hospice and funeral industries will likely have a passing knowledge of many kinds of death practices, but you can find a death doula who shares your beliefs, or who literally speaks your own language. Grieving, while it is a universal experience, isn’t generic, and Linquist says that it’s important for a family or person’s religious beliefs to be incorporated into their care plan.
But how can a doula help someone die with dignity if they can’t even be in the same room with them? “As doulas, we have had to get really creative about the ways we meet with people,” says Christy Moe Marek, a death doula in Minneapolis/St. Paul, and an instructor at International End of Life Doula Association (INELDA). Marek says that she has met with the families of dying people on their decks and porches, but that she has had to meet with most dying people via Zoom. It’s not ideal, she says, but adds, “it is opening up such possibilities given the constraints of the pandemic.”
Death doulas are finding new ways to support people. “So much of the way this works right now is in helping both the dying and their loved ones to manage expectations, reframing what they hope for, and to shift focus onto how the ways we are connected whether we are able to be together in person or not,” Marek says.
Marek says that helping people accept the reality of difficult experiences is really the whole point of her work. “During the pandemic, what is actually happening is different than we could possibly imagine and we may not like it. We may actually hate it with our whole being, but it won’t change what is. So we work with that,” Marek says, “And that is what ends up being the mark of a good death.”
Hilary thinks people can talk about their end of life wishes more easily with someone who is not family
By Junaid Nabi
When I started medical school, I fully expected to learn how the nervous system works, why heart attacks happen and what to do to stop them, and how the immune system sometimes turns against the body and causes autoimmune diseases. One of the things I needed to learn but didn’t was how to talk with people about death and dying.
To fill that gap, I enrolled in a course at Harvard Medical School on communication strategies during end-of-life care. It was designed to help budding physicians understand how spirituality, end-of-life care, and medicine interact. What I learned surprised me.
I found out that I wasn’t alone in feeling that I was ill-prepared for having effective end-of-life conversations. Physicians in general tend to be particularly limited in their ability to discuss issues such as how long patients will survive, what dying is like, or whether spirituality plays a role in their patients’ last moments.
At first glance, physicians’ poor understanding of death and the process of dying is baffling, since they are supposed to be custodians of health across the lifespan. Look deeper, though, and it may reflect less the attitudes of physicians themselves and more the system that nurtures them. After all, we train vigorously on how to delay the onset of death, and are judged on how well we do that, but many of us get little training on how to confront death.
At one of the seminars that are part of the course, a young man was asked about how he felt during the final days of his mother’s struggle with cancer. “Pain is not suffering if it has a meaning; if it doesn’t, pain and suffering are the same thing,” he said.
That juxtaposition of pain and suffering struck me as an important reminder of the vital role physician communication plays from a patient’s point of view. I realized that a transparent communication strategy can ease suffering and make pain more bearable.
In the process of my coursework, I also realized that significant communication barriers exist between physicians and patients to discussing end-of-life care. When physicians aren’t trained about how to approach patients and their families regarding end-of-life decisions, it’s difficult, if not impossible, to provide the care they want and need.
In one survey, nearly half of the medical students and residents who responded reported being underprepared to address patient concerns and fears at the end of life. About the same percentage said that “dying patients were not considered good teaching cases.” In other words, patients on palliative care with no need of further interventions were seen as offering little in the way of imparting clinical knowledge — even though they might have been wonderful cases for learning more about death and dying.
It’s still unclear whether such limitations arise from personal difficulty talking about this sensitive topic, an inadequate medical curriculum, or a lack of training during residency on how to communicate with terminally ill patients.
When a robust rapport between patient and physician is lacking, or when a physician hasn’t taken enough time to lay out all the options, hospitals tend to follow the “standard” protocol: patients — often at the insistence of family members — are connected to several intravenous lines and an intubation tube, or put on life-support machines, all because the patient or the family never had a clear conversation with the medical team about the severity of the disease and its progression.
That’s not how physicians prefer to die. In a famous essay, an experienced physician wrote that most doctors would prefer to die at home, with less aggressive care than most people receive at the ends of their lives. They understand that such efforts are often futile and take away from the precious time that could be spent in the company of family and friends.
Intensive management of patients with poor prognosis can result in severe emotional damage to patients and their family members. They also have significant policy implications: On average, 25 percent of Medicare payments go to patients in the last year of life, with one-third of that spent in the last month, often on clinical services with negligible benefits.
Physicians certainly share some of the blame for these gaps in communication. But we need to be aware of the role health care systems play in shaping end-of-life interactions. Over-treatment is often encouraged, and with little guidance or feedback on how to navigate end-of-life care, physicians can feel vulnerable to malpractice lawsuits. Due to ever-changing regulations, most interns, residents, and attending physicians are forced to spend more and more time typing into their patients’ electronic health records and less time sitting with their patients, talking with them and understanding what they want and need at the ends of their lives. The issue of resource allocation may also play a role. Medical centers often suffer from a shortage of physicians, and struggle to balance comprehensive teaching with quality patient care.
One way of addressing these deficiencies is to incorporate into the medical school curriculum required courses in which students are provided space and time to reflect upon the limitations they face when engaging with patients with terminal diseases. Some schools have already started this process, albeit as elective courses. Senior physicians also need to play more active roles as mentors, guiding younger doctors on how to approach these complicated situations.
In a book written as he was dying from lung cancer, Dr. Paul Kalanithi said this: “Doctors invade the body in every way imaginable. They see people at their most vulnerable, their most sacred, their most private.”
Physicians have a responsibility to initiate and maintain an open channel of communication with each patient, understand and address the values that he or she holds dear, and talk frankly about the prognosis of his or her disease. If they lack the skills to talk openly about dying and death, one of the most sacred and private transitions, they do their patients a disservice and possibly prevent them from receiving the best possible end-of-life care.
The argument about who can or should be responsible for confirmation of death has escalated and evolved over the past few years, alongside changing opinions and legislation regarding CPR and end of life care planning, etc.
And now arise the questions ‘does it have to be a healthcare professional?’; ‘does the healthcare professional have to be there in person?’; and ‘can undertakers confirm death?’
The law has not significantly changed – it still remains that any competent person can confirm death. It‘s only by convention that ‘person’ has been historically replaced (to varying extent by postcode lottery) with ‘healthcare professional’.
Within Dr David Church’s relatively recent blog ‘The stormy night that shaped my views on death verification’, and the following responses, all I see are attempts to justify the status quo based purely on anecdote and modern medical cultural convention. We all want to believe that the days of healthcare policy being based on anecdote are gone, but in reality this is all based on personal bias, hearsay, and myth.
Let’s stop trying to insist that ‘confirmation of death’ is some kind of healthcare copyright issue
So, in the discussions and comments, out come the historical tales of live burials – should we then advocate having a bell system installed in all graves again, as in the 19th Century? And the hypothermic resurrections from the dead – should then every cold body be warmed up, as in the Resus Council hypothermia guidelines (not dead until warm and dead)? Good luck convincing all the hospitals and mortuaries to warm all bodies to normal temperatures before confirming death – they’d be stinking fly pits!
Yes, errors do happen, but extremely rarely. Healthcare-only verification of death is a modern phenomena, driven by persisting attempts to use medical ‘knowledge’ to run away from the inevitable. It’s time to grow up and stop using rare ‘errors’ in verification to cling to current imperfect, unsustainable and inhumane dogmatic ‘rules’ governing ownership of death. How will western society finally grow some cultural wisdom and accept that death is a normal part of life? That death is not failure, not an error, but is an absolute fact of existence, with a 100% lifetime prevalence?
It won’t, as long as the medical/healthcare world continues to grasp at and peddle the concept that death is a medical diagnosis, and can only be confirmed by someone with a five-year degree and however-many years’ apprenticeship. As long as the Grand Guild of Medical Magicians continues to promote the myths that life and death are under our mysterious control, people will continue to live in the shadows of mortal fear, beholden to us to rescue them, and so keep expressing the very same unrealistic expectations that GP mages complain about every day.
My opinion on confirmation of death… the bodies of those who have died will all be dealt with by either an undertaker (mostly), or a pathology morgue. Undertakers are the experts in management of death – handling, dressing, caring for and disposing of the bodies of the deceased. Surely then, they are best placed to be trained in recognition and confirmation of death in the community, as a standard part of their normal procedures?
Death is not a medical ‘condition’ or ‘diagnosis’ to warrant its control by medical/healthcare workers, any more than birth or taxes. Hand back normality to the people. Then, we may find other unrealistic expectations ‘imposed’ on us from our patients start to dissolve away too, because we‘ve been the ones clinging to their ‘need’ for us all the time.
Let’s stop trying to insist that ‘confirmation of death’ is some kind of healthcare copyright issue.
It’s a medical specialty that focuses on providing relief from the symptoms and stress of a serious illness to improve the quality of life for both patient and caregivers. But while the specialty’s goal is to help all patients with a serious, potentially life-threatening illness, palliative care specialists are almost always involved with patients approaching the end of life.
The result is that the very phrase “palliative care” has become frightening to many people with critical illnesses and their families, wrongly raising the idea that they are being sent to specialists who will help them die. Now a growing movement is advocating to rename palliative care so that patients — and doctors — won’t fear using it.
A recently published research study analyzing the general public’s perception of palliative care among more than 5,000 older Americans revealed that over 70 percent of participants did not even know what palliative care was.
Katy Butler, a health-care journalist who has written about her own experiences as a caregiver for her parents, wrote in an email: “Although I had a general sense of the meaning of palliative — to soften, to soothe — I didn’t understand anything about what it meant in medicine. People in crisis do not have the headspace to learn new vocabulary. It’s one of medicine’s major failings that it expects them to.”
Of those who are aware of palliative care, the same study shows almost two-thirds think it is the same as hospice, which is a service delivered at home or in a facility for someone with an expected survival of no more than six months.
Most physicians are likely to call palliative care specialists primarily when death is imminent — many worry that calling in a palliative-care consultation will increase anxiety and fear among patients. Diane Meier, a palliative care specialist who directs the Center to Advance Palliative Care, said “doctors are the group most fearful of death. We are people who like to achieve control over the uncontrollable. For our profession in particular, it is existentially threatening. Any acknowledgment that life is finite, that we don’t live forever, is like saying there is no God.”
Yet palliative care not only has been shown to repeatedly improve quality of life in patients with conditions such as cancer and heart failure, but also has been shown in some studies to help people live longer, perhaps through avoidance of potentially ineffective treatments, procedures and hospitalizations.
To increase the acceptability of palliative care for both patients and clinicians, as well as to delink it from death, palliative care practices around the country are substituting the name “palliative care” with “supportive care.”
There is evidence to suggest that this name change might reduce reluctance to engage palliative care specialists in the care of patients with advanced illness.
A study from MD Anderson Cancer Center in Houston showed that changing the name of the palliative care service to supportive care led to not only an increase in referrals by 41 percent but also earlier referrals: Patients seen by “supportive care” lived on average for 6.2 months, compared with 4.7 months among patients seen by “palliative care.” In a randomized trial, patients with advanced cancer viewed the term supportive care more favorably and were more likely to anticipate using supportive care rather than palliative care.
Words clearly matter and perhaps never more so than when life hangs in the balance. Yet even as evidence mounts, one study found that many palliative care specialists oppose a change of the specialty’s name. There are countless medical journals and organizations that have palliative care in their name.
“How do you identify as a tribe, as a field, as a subspecialty if you don’t know what your name is,” said Meier, a professor at the Icahn School of Medicine at Mount Sinai. Yet Meier also believes “we should call it whatever it takes to get it to the patients.”
The resistance to palliative care is ultimately rooted in our collective denial of our mortality. “Changing the name doesn’t change the underlying dynamic,” said Anthony Back, a palliative care physician and professor at the University of Washington in Seattle who was a co-author of the recent study on public perceptions. “Palliative care specialists are often used [late in the process] as the ‘brink of death consult.’ And if we don’t change ourselves, changing the name isn’t going to be enough.”
Even as the debate goes on, the use of “supportive care” is growing among those who treat patients, and instead of educating the public about what palliative care means, they want to focus on what palliative care does — what the benefits are not just to those at the very end of life.
Yes, palliative care specialists will be asked to see patients where other doctors find them of most value — when death is imminent — but the concept that really needs rebranding is death itself. As long as patients and doctors react to that fear by recoiling at its every mention, any new name reminding them of their mortality will quickly become tainted.
This seems important at this particular moment: the covid-19 pandemic has raised the specter of death for many people who hadn’t thought it would apply — yet — to them. People not only face a higher risk of premature death from the disease, they often have to do it in the worst circumstances possible — with a breathing tube down their throats and all by themselves.
Yet, because of the pandemic, palliative care doctors believe that they might have an opportunity to redefine what they do and demonstrate its value to patients in need.
“In New York, there was this urgency with which our colleagues sought our help, because they were under such extreme stress. It made me comment that covid-19 was the best marketing campaign palliative care could have asked for,” Meier said. “Our colleagues were looking to us to be the human side of medicine.”
In providing care to the sickest patients in the hospital, many of whom survived, palliative care specialists provided crucial supportive care not just to patients and their loved ones, but also the doctors struggling to take care of them.
The pandemic has given palliative care doctors more work than ever before and has added a new charge to palliative care, Anthony Back said, to fulfill our most human desire — to acknowledge the moment.
Modern medicine excels in ways to save a beating heart.
Yet hardly anything is known about how to humanely stop one.
Frustrated by the dearth of information about how to aid dying, Berkeley’s Dr. Lonny Shavelson is gathering data to guide other physicians through this new, important and sorrowful clinical frontier. Legalized in 2015, California’s End of Life Option Act allows doctors to prescribe life-ending drugs to terminally ill patients.
“We’re doing a medical procedure. And whatever is done in medicine should be done well, and consistently,” said Shavelson, 68, a UC San Francisco-educated former Emergency Room physician.
“Now we can tell patients: ‘We’re giving you the best protocol we have,’ ” said Shavelson, whose Bay Area End of Life Options medical practice has overseen 232 deaths. “And we’re getting better and better.”
When Californians passed the medical aid-in-dying law – inspired by Oakland’s Brittany Maynard, San Mateo’s Jennifer Glass and others who sought to end their suffering from cancer – voters assumed it promised them a neat Shakespearean-styled ending, like Romeo’s quick poisoning in Verona. That was the goal, but it didn’t always happen.
A little-known secret, not publicized by advocates of aid-in-dying, was that while most deaths were speedy, others were very slow. Some patients lingered for six or nine hours; a few, more than three days. No one knew why, or what needed to change.
“The public thinks that you take a pill and you’re done,” said Dr. Gary Pasternak, chief medical officer of Mission Hospice in San Mateo. “But it’s more complicated than that.”
So Shavelson, in collaboration with Washington-based retired anesthesiologist Dr. Carol Parrot, set out to compile data to help doctors help their patients. At a UC Berkeley-based conference last February, they co-founded the American Clinicians Academy on Medical Aid in Dying. The Academy’s 240 clinicians are now contributing and sharing their own experiences.
Dr. Lonny Shavelson, of Bay Area End of Life Options, looks over data at his home office in Berkeley, Calif., on Tuesday, Feb. 18, 2020. Shavelson is leading a data collection project to learn what medications most quickly and gently bring the person to their requested death under the 2016 End of Life Options Act.
To each deathbed, seated with grieving family members, Shavelson brings a clipboard with drug names and dosage levels.
As minutes tick by, he measures falling oxygen levels, slowing cardiac rhythms and fading respiration. He tracks outcomes while providing care.
The pharmacologic findings, shared with clinicians nationwide, are dramatically reducing the incidence of long, lingering and wrenching deaths.
“It’s really helpful to have someone actually studying the utility of what it is we’re doing,” said Pasternak. “So much of what we’re doing has arisen empirically. He’s collected such great data.”
“Patients want a medication that is effective. They want a swift, peaceful death,” he said.
Using the initial drug regimen in place when the law was passed, 34% of all patients took longer than two hours to die; one man died after 11 hours. A second regimen reduced that to 20%. With the current protocol, fewer than 10% of patients take longer than two hours to die, and most patients die in 1.1 hours, on average.
The protracted deaths didn’t create suffering for patients; they are in a deep coma. But the lengthy vigils can be agonizing for loved ones.
“After two hours, people were starting to get concerned, and restless,” Shavelson said. They wonder what’s happening. People start walking around the room, going into the kitchen. It disrupts the meditative mood. Between two and four hours – that’s not ideal. Anything over four hours we consider to be problematic.”
“I was looking at what was happening and thinking: ‘This isn’t as good as it’s been hyped up to be,’ ” he said.
There’s no repository of information to help doctors in states that have passed aid-in-dying laws, representing 22% of the U.S. population. The U.S. National Institutes of Health won’t fund the research. Medical schools don’t teach it. Hospitals don’t oversee it. Without that official support, medical journals won’t publish any findings.
Traditional medical research is conducted at universities and medical schools, “and they won’t touch the topic,” said Shavelson. “They’ve completely abrogated their responsibility to patients who are dying … bowing out of their traditional role of teaching, research and providing quality care. It’s taboo. There’s still a stigma.”
When aid-in-dying was first passed in Oregon in 1997, patients were given secobarbital, sold under the brand name Seconal. It induces deep sleep, then a coma that is so deep that the brain no longer drives respiration.
But that drug wasn’t consistently quick. Then it became prohibitively expensive, finally unavailable.
To replace Seconal, the doctors invented a three-drug cocktail — a painkiller, sedative and a heart-slowing agent — based on their experiences with overdose deaths. They later added another cardiac drug. But problems remained.
While sitting at the bedsides of several six-hour deaths, Shavelson pondered what was going wrong. He speculated that one cardiac drug was rendered ineffective by the large quantities of the other drugs. So he separated that out and gave it earlier, so it had time to act.
When some delays persisted, he replaced one of the heart-slowing drugs for a heart-damaging drug.
Based on newly compiled data from Academy clinicians, the formula is about to be improved again, pending confirmation of results.
Shavelson and Parrot have identified which patients are more likely to linger, and can recommend adjustments. People with gastrointestinal cancer, for example, don’t absorb the drugs as well. Former opiate users often have resistance to some of the drugs. Young people and athletes tend to have stronger hearts and can survive longer with low respiration rates.
“We’re learning. Hypothesis, data and confirmation. This is what science is,” he said. “Our job is to stop the heart; that’s what they want us to do.
“We haven’t made it less sad. It’s still death. There’s tears and crying,” he said. “But it’s a better ending.”
