There’s no denying that caring for a dying loved one is a heart-wrenching experience. Through specialized quality care, however, patients and their families can continue to share meaningful moments, despite a terminal diagnosis.
Every year, hospices and palliative care centers across the nation unite to raise awareness of available options for end-of-life care. How does hospice and palliative care work? Hospice and palliative care maximize the quality of life of people with advanced or life-limiting illnesses through pain management, symptom control, psychosocial support and spiritual care, among other means.
What can you do to help?
Understanding what to expect and what you can do to increase a patient’s comfort level can help ease their suffering. Consider their unique physical, emotional and psychological needs.
• Re-adjust pillows beneath their head to help with labored breathing.
• Be calm and reassuring. Remind your loved one where they are and who is present. Seek help from a medical team if significant agitation occurs.
• Maintain a comfortable room temperature. Provide warm blankets in case of a chill or install a humidifier in a moisture-deprived room.
• Encourage your loved one to communicate unsaid thoughts. Ask open-ended questions about their beliefs or meaningful life moments.
• Seek clarity about the type of care your loved one wishes to receive, in case they can no longer speak for themselves.
• Invite family members and close friends to show their support and say their farewells.
Is someone close to you facing a serious or life-limiting illness? Visit www.nhpco.org for caregiver assistance and resources.
Biden must make good on his promise to support families with sick loved ones.
By Kate Washington
Five years ago I stood in a tiny hospital room wondering how I was going to care for the man I loved most without succumbing to despair.
For four months, my husband, Brad, had been recovering from a stem-cell transplant that saved his life from aggressive lymphoma. The hospital administration said he must go home, but he needed a level of support that, I thought, only a hospital could provide.
His homecoming ought to have been cause for celebration. But I felt anything but joyful. The night before his discharge, unable to sleep, I felt so trapped and terrified that I called a suicide hotline, even though I wasn’t really sure I wanted to harm myself. I was so desperate I needed to hear a compassionate human voice, and I couldn’t think of anywhere else to turn.
Though isolated, I was far from alone: according to a 2020 survey by AARP, more than 50 million Americans now serve as unpaid caregivers for adult family members or friends. That number will rise as the baby boomers age. That’s the bad news. The good news is that with the Biden administration committed to a bold, integrated vision of care, we have a once-in-a-generation opportunity.
The plight of family caregivers, who often compromise work, finances, friendships and their own health to support their ill or disabled loved ones, has long been overlooked in U.S. policy. While some states offer programs to help caregivers, they can be inadequate and hard to navigate. The coronavirus pandemic has revealed many problems in our health system, and few more starkly than the way it both undervalues and relies on caregivers.
I became painfully familiar with caregiving’s challenges during Brad’s months of chemo in 2015, but it was his 2016 stem-cell transplant — a last-ditch treatment for relapsed cancer — that showed me just how broken our system is. When he was discharged, he was immunocompromised, blind, too weak to walk unassisted, and unable to eat more than half his calories.
“He’ll need attendance 24 hours a day,” his oncologist told me. I stared, panic rising.
“How am I supposed to do that? We have two kids,” I said. Even meeting our family’s most basic needs would be impossible.
“Well, usually family steps in and it works out fine,” the doctor replied, waving away my concerns. Our family had been extremely supportive but couldn’t drop everything indefinitely. A nurse suggested organizing shifts of friends, but my friends, like me, were working parents.
Besides, caring for Brad wasn’t simply watching him. He came home with 35 medications that had to be administered on a mind-boggling schedule, as well intravenous nutrition that I had to hook up, a complex procedure that I learned to perform in a hasty training session from a nurse. He needed blood sugar tests and assistance with toileting, showering and other intimate acts at which even close friends might well balk.
Insurance does not cover home attendants even when medically necessary. Our benefits did pay for skilled nursing visits and home health aides for assistance with showering twice a week, but for the 24-hour care the doctor prescribed, we had to pay out of pocket. The summer after Brad came home, we spent more than $21,000 on in-home care, dipping into savings and an inheritance from my mother to do so. We were very fortunate to have those resources; for many families, it would be out of reach.
It’s often noted that the United States is alone among rich nations in not providing maternity leave; support for child care is likewise abysmal. Similarly — but often more invisibly — we leave millions of caregivers with little or no support in managing the financial, logistical and emotional difficulties of helping ailing parents, spouses and children.
The Biden-Harris campaign made an ambitious caregiving plan a key plank of its platform. Early signs from the new administration are promising. Mr. Biden’s $1.9 trillion coronavirus emergency relief package includes measures benefiting caregivers: extending stimulus payments to cover previously overlooked adult dependents, tax credits, and paid family and medical leave. Some of these benefits would help family caregivers of all kinds; others specifically aid those tending people with Covid-19.
Although pandemic relief is the most urgent priority, change must not stop there. The plan Mr. Biden rolled out during the campaign proposed an integrated approach to supporting child care, care for older people, paid care work, and family caregivers. Among other measures, it floated a $5,000 tax credit for unpaid caregivers, Social Security credits for those who must leave their jobs to provide care, and 12 weeks of guaranteed paid family leave.
The plan would also offer wider access to home- and community-based long-term care and support services. Gaps in Medicaid coverage for these services has resulted in long waiting lists and made it harder for people to receive needed care at home.
Such changes would clearly benefit both family caregivers and paid workers, who are disproportionately women of color. With few job protections, in-home workers have long had difficulty finding stable, well-paid work, a plight worsened by Covid-19. The Biden policy team has argued that its plan would create up to three million jobs in care work and education, benefiting populations hit hard by pandemic job losses.
The changes wouldn’t help just caregivers like me; what’s good for caregivers also benefits those who need assistance. Expanding home care can keep frail elderly people out of nursing homes, the drawbacks of which have been painfully exposed by the pandemic. Easing financial strains and burnout for caregivers can mean better, more compassionate treatment, which in turn can improve quality of life and outcomes for our most vulnerable citizens.
Even though I had support systems and family to help, and we could afford supplemental care, my husband’s long medical ordeal was almost unbearably stressful. Supporting a catastrophically ill person will never be easy — but in the United States today, it’s far harder than it needs to be. Our system largely abandons those with less privilege than I have to struggle alone caring for those we love most. The result for many is burnout, bankruptcy and profound suffering.
Though my husband remains chronically ill, he has recovered his vision and his independence. There are millions more out there now as desperate as I felt five years ago, crying for relief. A Biden administration primed for change, with the slimmest of Democratic Senate majorities, means there’s a real opportunity to reform and mend our broken systems of care. If we are to have the caring society we all deserve, caregivers and recipients alike, we must not lose that chance.
For most of us, the word “doula” is firmly associated with a coach helping a mother through childbirth. A modern-day version of a traditional midwife, a doula, is not a healthcare professional, but rather a guide, whose goal is to comfort and support women in labour both physically and emotionally.
Derived from the Greek word δούλα (“servant-woman”), doula stands for a woman who lends her knowledge, experience and presence of mind during the arduous process of childbirth. In the Western world, the popularity of birth doulas started to gain traction in the early days of the reproductive justice movement back in the ’70s.
Striving for more natural and less medical experiences women turned to doulas, who’d often act as advocates for women and babies in hospitals which weren’t always friendly and accommodating.
Recent years have seen the rise to a different kind of doulas, quite the opposite of those attending to childbirth. These are “death doulas” who support people in their end-of-life journeys. Also referred to as “death midwives”, their vocation is a relatively recent phenomenon emerging as part of the mindset recognising death as a natural, accepted, and honoured part of life.
Death doulas are by no means there to assist in ending one’s life (at least in the countries where euthanasia is illegal), but rather to ease the transition both for the passing person and his or her loved ones, who stay behind/Sharon McCutcheon via Unsplash
There are remarkable parallels between being born and dying, and in both life scenarios, doula’s aim to reduce anxiety and confusion, manage the pain, and, if possible, make the experience more peaceful. Just as birth doulas are coaching mothers on birthing a baby, death doulas are coaching people on dying. They provide non-medical aid which is a mix of emotional and practical counselling that can make all the difference.
Christy Moe-Marek, an end-of-life doula from Minnesota, says that doulas emerged from the Baby Boomers, behind the natural birthing movement. They decided to take things into their own hands as far as dying goes: “They’re saying, no, I don’t want the death my parents had. We are rich in possibility, why can’t I make this whatever I want it to be?”
Death doulas – just like midwives – have been around since the beginning of humanity. Traditionally their roles were played by the wise women from the community or extended family.
However, with the disintegration of traditional societies and the extended family per se, we have lost touch with our roots as we often find ourselves helpless in the face of the imminent. Death customs and practices within families have all but vanished as palliative care was delegated to hospitals and the funeral industry was commercialised. But these days people are yearning for a better life – and death! – and this is when doula’s role becomes so crucial.
According to The New England Journal of Medicine, the number of Americans wishing to die at home rather than in a hospital environment is the highest it’s been since the early 1900s/Dominik Lange via Unsplash
They want to pass away surrounded by their family and friends, who could be overwhelmed by witnessing the final days of their loved ones while feeling helpless and powerless. The trade of a modern death doula has emerged as a response to the people’s fear of facing death and even contemplating it. Death doulas have started a conversation about dying and have, in some way, given voice to those making the transition. After all, these days many more people get a chance to linger on a bit longer despite terminal illnesses thanks to the advances in modern healthcare. In many cases, they do need someone to discuss their transition with and make it more meaningful.
Unlike death midwives of the past, our contemporaries are women (and sometimes men) old and young, coming from different paths of life. They help people on the threshold of passing to write letters to their unborn grandchildren, to arrange farewells with relatives; they may perform traditional or religious rituals for their charges or offer assurances.
Doulas bridge the gap between the dying and their families, facilitating conversations about death, explaining things and advising when it’s finally time to let go. Some say that working with a death doula opens people up to a more spiritual side of death with less anxiety and trepidation/Manikandan Annamalai via Unsplash
As death doulas are gaining more mainstream attention, there’s been an ongoing debate, whether they should provide free services rooted in the community. For instance, in communities of indigenous people or African people death doulas have continued to be a steadfast part of the culture. On the other hand, most of today’s end-of-life professionals aren’t being supported by specific communities and, thus, cannot afford to render their services for free. In big cities, where tightly-knit communities ceased to exist a long time ago, death doulas are usually hired by the family of the person nearing the end of life. Still, their responsibility remains with the dying, whether they are being attended to at home, or in a hospice.
In traditional cultures, the art of attending to the dying is passed down from generation to generation. But a skillset of a death doula isn’t “god-given”.
It is something that can be learned. These days one can learn the ways of a death doula by attending training courses or seminars. Neither in the US or Europe are there national regulatory agencies that would provide licensing and oversight. Most likely, their creation is just a matter of time. The decision to become a death doula is often made after attending a dying family member. Others translate years of experience as nurses and palliative care specialists into a new dimension, and some feel the need to make traditional passing-related rituals available to members of their communities. Groups that train death doulas are usually led by nurses and social workers who want to change the impersonal nature of the dying experience most people faces. In the US organisations like The Doula Program to Accompany and Comfort, in New York, The International End of Life Doula Association (INELDA), or Lifespan Doulas and other groups train people to become death doulas.
In Russia, death doulas are virtually non-existent, because palliative care is still in its infancy, and people are culturally opposed to an open conversation about death and dying/Bret Cavanaugh via Unsplash.
However, the need to make dying less clinical and remove the fear and stigma surrounding death has become tangible. Society seems to have gradually realised that dying people, in whose shoes we’ll all end up one day, deserve greater compassion and companionship in their final days. Shelby Kirillin, an end-of-life doula, based in Richmond, Virginia, reasonably wonders “Can you imagine if a woman was going through labour and no one around her was talking about it or preparing for it? There’d be an uproar if we treated birth like we treat death”.
When it comes to dying, traditions and modernity don’t necessarily have to clash. Indigenous cultures have long regarded death as an essential part of life, and even though thanks to modern healthcare options the process of dying these days can be virtually painless, a “good death” is more than just a painless one. That being said, the emergence of death doulas is, perhaps, the best thing that’s happened to humanity in a long time.
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.
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.
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.”
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.
What is it like to care for someone you love who is dying from advanced cancer at home during lockdown? Kate Binnie discusses it can heighten isolation and moral distress for the family caregiver
One evening in early May during lockdown, Alan calls me almost raving with exhaustion. He’s caring for his mum, my friend Mary, who is in the final stages of stomach cancer and who has chosen to die at home. It seems to him that this last part—where she has stopped eating or drinking and is in bed hooked up to a syringe driver for pain relief and sedative medication—is going on forever. Tonight she seems irritated and upset although she is not coherent, and Alan cannot soothe her. There is a live-in carer who is helping with the heavy lifting, changing of sheets and so forth, but otherwise Alan is completely alone apart from short daily visits from the community nurses. We talk for a while and I suggest he a) tells the palliative care team what is going on and b) writes down how he feels. An hour or so later an email arrives:
In lockdown with having more than too much time on my hands, I question how in 2020 this cruelty is continuing without any other choice than to endure it or look away.
The nurses keep saying that the drugs are “keeping Mum comfortable” but I can’t see there is any way to describe what I witness to display any kind of comfort—a slow death is not comfortable for anyone no matter how you sugar-coat it.
Alan is right. There is no evidence to prove that sedation improves quality of life for the patient with terminal delirium/agitation and of course we have no first-hand accounts from dying patients to draw on.  What he describes is the shock and moral dilemma of a totally untrained and unprepared member of the public, caring for a loved one in the last phase of life and finding it hard to communicate effectively with the professionals charged with his mother’s care. All this is made worse due to physical isolation during the covid-19 pandemic.
I feel like I’m failing my Mum, but actually it’s the law that is failing us both. I have had to administer oral morphine as the carer is not allowed because it is a controlled substance. My mind has turned to helping her end it, but I know she would not want me to ruin my life by doing something that would put me in prison. The desperation to see my mum in peace is a hugely strong emotion. It made me wonder how stressed I, or someone in a similar position, has to get before the wish to end the suffering becomes stronger than self- preservation.
I have also considered taking some of the anti-anxiety medication that has been provided for her just so I can sleep. If I found it all too much, I could drink the three bottles of morphine and I assume that would do the trick. Being someone that has struggled with life in the past and has turned to drink and drugs as a coping mechanism I’m amazed that I am the person that has to administer and has access to all these drugs.
Alan’s complex feelings about being in charge of controlled medications do not appear to be singular. A recent review of family caregiver experiences of managing medications for patients dying at home revealed a lack of training and support for family caregiver who worry about over or under-medicating their loved one.  Patient and family attitudes to anticipatory medications and issues around misuse in home deaths are under-explored in the literature. As Alan discovered—and the Wilson review corroborates—health professionals lack confidence in discussing the ethical implications of family care givers becoming medication gatekeepers at a time of extreme stress and anticipatory grief.  A stress that is magnified during lockdown where normal structures of support are unavailable leaving Alan feel traumatised, angry and abandoned.
How on earth is it kind to put a family pet out of its misery but somehow say it’s ok to drag dying out like this in a human? Do you ever stop being a child when it comes to watching your parent deteriorate and have no real belief that they are not suffering? Surely this is traumatic for anyone?
With the lockdown as it is, I cannot share this with people properly and have to make do with video and phone. I’m glad I’ve managed to hold on to rational thought and have not acted illegally due to immense pressure added to the temptation of having the means left right under my nose.
How many people will maintain that rationality in this lockdown, and whose fault would it be if they buckled under the strain? At the very least collective responsibility but most likely the individual would carry the blame, and all the people that can’t face up to the truth about this problem with the law will continue to live in the world they describe to themselves as ‘kind and comfortable’ without acknowledging that other people feel their loved ones are being effectively tortured and the onlookers traumatised. It would never have been mum’s choice to die this way.
In spite of current urgency in the media and within health and social care cultures during the pandemic to talk about death, dying and grief, there’s another level of this conversation about dying that we are still not having. Yes, advance directives are important so that treatment plans, place of care, and death can be discussed, and informed choices made in good time. But what about the end bit? Is the messy reality of and fallout from a home death really considered?
Specialist palliative care professionals are trained to meet the physical, emotional, and ethical needs of patients and families, but they are not resourced to be available for all home deaths, all of the time. Getting adequate home support (especially during lockdown when resources are directed elsewhere and infection risk reduces human contact) requires hugely responsive joined-up thinking, enough manpower and resources, competent relatives and excellent communication. It only takes a few mis-timed, mis-judged, and overly stressed conversations for this fragile system to break down. And still—the body takes its sweet time. There is nothing more lonely than waiting for someone you love to die. Even experienced doctors in this position are pushed to re-appraise what amount of suffering is acceptable at the end of life. 
A survey from 2019 by Dignity in Dying revealed that 73% of people with a life-limiting illness with six months or less to live would choose to change the law so that they could choose an assisted death. And yet in practice conversations about this are often taboo. My mother—who died nine months ago at home from heart failure—kept asking about the possibility of assisted dying in spite of her strong spirituality and huge optimism. This was not depression or despair, but a fine mind and a loving heart wanting to maintain her dignity and protect her child (me) although I reassured her constantly that we would cope and that it would be OK. I was there when she asked the specialist about it and there was a sense of real discomfort in the room, as if she’d made a bad smell at a polite dinner party. It took the two of us, supported by a fantastic GP and heart failure nurse, working calmly and consistently with everyone involved with Mum’s care to have open conversations about dying, until we had clarity about no more hospital admissions, no more oral drugs, or other treatment.
I have over 10 years’ professional experience of being with dying so knew what to expect when Mum’s time came. For example, I understood that there was a complex and delicate relationship between the patient (Mum) the family care giver (me) and the healthcare professionals, and that the maintenance of this relational triangle was key.  In terms of actual dying, I recognised that the introduction of sedatives would reduce mum’s ability to communicate, and towards the end I knew what the frightening changes in Mum’s breathing meant and also that this might go on for some time until her last breath. But for most family members, watching someone die at home with all of the responsibility that this entails, is an un-familiar and un-held experience, broken only by the precious 30 minutes a day when the community nurse visits to introduce some calm, practical sense into what feels like a Kafka-esque alternate reality.  And remember, this was pre-lockdown. I was not alone and had my family and friends around to help me rationalise, to provide physical comfort and time to eat and sleep.
I suggest that alongside the current policy-level drive for supporting home death underpinned by evidence that this is what many people would choose, there needs to be a rapid re-appraisal of what this means for family members who are not trained or supported to do the job of extreme caring (which includes the administering of controlled drugs), and for which they are totally unprepared.  Funding and provision must be made within primary care, informed by the principles and practices of palliative care, to properly educate and support families through the dying process and into bereavement so that what Alan describes in the desperate last 12 hours of his mother’s life does not end in long-term mental health consequences or worse, a suicide or prison sentence. On a more subtle, emotional level we need to understand that calling NHS111 at 2am when your mother is terminally agitated is a cry for help from someone experiencing the searing pain of a breaking attachment.
The next morning, I check my phone. Mum died at 3.45am.
I call Alan who is relieved and exhausted He is facing the organisation of his mum’s cremation, the sorting out of her stuff and his life onwards in a seemingly endless lockdown. There isn’t going to be a funeral. I suggest he try to get some sleep, talk to his GP, think about bereavement counselling, but he is in no mood for any sort of healing conversations with the professionals. I want people to know about this Kate he insists. I can’t be the only one this is happening to, can it? No, it can’t be. Around 450 people die every day in the UK from cancer, and about 25% of all deaths occur at home. What is it like for those families at the moment with huge pressure on services and hands-on community support from friends and relatives an infection risk and therefore forbidden?
The covid-19 pandemic has shone a fresh light on the importance of talking about dying, loss and grief in strange times where relationships are cruelly truncated by sudden hospitalisations, induced comas and separation from loved ones and community rites of passage. But deaths like Mary’s from cancer are happening every day, all the time.
Alan’s story shows us that what is a difficult and lonely experience at the best of times is made so much more traumatic during lockdown. Alan hopes that sharing his experience will lead to a greater awareness of just how traumatic it can be to facilitate a home death (which sounds cosy yet can be anything but). He wants to tell us about what he feels is a cruel lie that dying is kind and comfortable, and he challenges us to examine the dissonance between the reality of his lived experience and the beautiful idea of the “good death”.