Maggie’s counsellors help those with terminal cancer cope with fears, worries and practical issues
Lisa Punt doesn’t cry at work. She has never cried at work, even though work, for Punt, is counselling people with terminal cancer and the friends and families of people with terminal cancer.
It must be about as difficult and heart-rending as work can be. Most of us would surely feel tearful when helping people face their own death. And not just their death, but all the concomitant details associated with it, big and small. Who will look after the children? What will happen to the house? What will my spouse do without me? And who’ll water the plants?
What is required of Punt, however, is calmness. “I don’t think I’ve ever been tearful within a consultation or within that interaction. And I think the reason for that is that we [the counsellors] bring to that therapeutic relationship an element of empathy, so we can see what they’re feeling, but at the same time we try very much to step outside actually feeling that emotion that they are experiencing.”
It’s a tough job, Punt says, but it is also a meaningful one. “We see the difference we make.”
Sometimes, though, a particular case will hit a counsellor harder than usual. In those cases, Punt tells me, that counsellor can talk about it with their colleagues, unpicking the feeling and carefully managing it. This process ultimately helps them support the patients and families who need their help. “We are there in a professional capacity,” says Punt, “and we are there to deliver formal, psychological, emotional support, which is part of our training.”
Punt, 51, is the centre head and a cancer support specialist at Maggie’s Cambridge. Maggie’s Centres are places where people with cancer – and their friends and families – can come for support and advice. The centres are beautifully built, designed to be an antidote to the strip-lit hurly-burly of a typical hospital. Within them, staff offer services such as yoga classes, financial advice and, most importantly, a friendly ear.
Maggie’s Cambridge, which is where Punt takes my call after delivering a counselling session, is in the grounds of Addenbrooke’s Hospital. The centre is temporarily housed in former accommodation for hospital staff, but Punt and her colleagues are working towards building a permanent home. “It’ll hopefully be very soon,” she says.
Diagnoses of terminal illness, says Punt, affect people very differently. “When someone walks through the door, we’re trying to work out, ‘What are their major concerns?’ When they’re faced with a terminal disease, they may very much have huge levels of anxiety, fear and worry. There are things like finances, or, ‘How is my partner going to manage when I’m not here if I’ve always sorted out the car insurance or the health insurance?’”
First, the warm, down-to-earth Punt helps her visitor work through their fears around death and dying, which must be no mean feat. The visitor might then be in a better position to address their more practical concerns.
People worry about mortgages, credit cards and life insurance. They wonder whether to retire on the grounds of ill-health and take their pension, or go off sick to ensure a death-in-service payout for their next of kin. They are concerned about funeral arrangements. They might be disinclined to write a will, feeling it to be an acceptance of defeat, but if they seek guidance on that they are offered it, often being given time with a solicitor, free of charge. “Once these things are done,” says Punt, “you have more cap-acity for life, even in the face of death.”
It is breadwinners who tend to worry the most about money issues, says Punt. They are more likely than not to be male, but it is the fact that they are the main earner, rather than their gender, that seems to be the strongest determinant of concern about a family’s financial stability.
Men are less ready to be emotionally voluble, says Punt, and are more likely to attend a support group if its stated purpose is something other than just talking. That purpose can be something as mundane as gardening or sharing bacon butties, but its effect can be to encourage conversation that is as valuable to men as it is to women.
Men and women alike wonder about their partner finding someone new, and it’s not uncommon to feel anxious about being replaced. You might call this the “I bet you’ll end up with Barbara” worry. As Punt puts it: “When children are involved, that’s a very emotive situation. Perhaps a mum is dying and there are two young children who are going to be left behind. Who is Dad going to meet and who’s going to be in the shoes of Mum? That can be a real concern.
“But then, on the other hand, there may be someone who actually gives permission to their partner to go out and find somebody and to not be lonely. It’s such an individual thing. I think the beauty of what we’re able to do, and the privilege we have, is that we can sit with somebody, whatever their fears and worries and concerns are about when they have died, and we can work with them.”
Punt tells me about a family she worked with fairly recently (we have changed some details for the sake of their privacy) where a married man with a son and daughter was told he had a year to live. It was his desperate wife who came to Maggie’s first, recalls Punt. “He was totally in denial and just carrying on as normal and she was trying to sort everything out.”
The husband eventually came for counselling, too. Punt and her colleagues then supported the family in starting a range of conversations. There were finances to discuss, plans for the garden and some decorating that the man had wanted to see through. There was their children’s education, at school and at home. “He wanted to show his son how to shave,” Punt says.
Where appropriate, the children were involved in these conversations. They were given time with an art therapist, who helped them articulate their emotions in a gentle setting. They were given the option of sitting with their father till the end, and they took it.
The man died at home, says Punt, surrounded by his family. “I think the last few hours were not desperately comfortable. But I think it was as good as it could be.”
What will happen to my family after I am gone?
Mandie Malcolm, 32
I had just turned 26 when I discovered a lump on my breast. Because a lump can be any of several things, I wasn’t too worried. What a shock I got when the doctor said it was cancer. Worse, it was secondary cancer: it had spread aggressively. I was told soon after the diagnosis that I probably had a couple of years to live.
It was petrifying. My mum was with me when I got the news, but the worst thing was breaking the news to friends and family. We’re very close, and they’re all supportive, but I knew it must be hard for them as well. I was always thinking about dying and leaving them behind. At the same time, there was so much I still wanted to do, like travelling the world.
Mum started using Maggie’s Edinburgh before I did. When I went myself, I was nervous on the way over, but from the moment I walked in they were all so friendly. Thanks to Maggie’s I’ve had loads of one-to-one counselling sessions and group sessions with other people going through the same as me. I go to yoga classes at the centre, and I’ve had loads of help with my finances. There are horrible, complicated forms to fill out in order to get benefits, but the adviser from Maggie’s helped me with the paperwork and took all the pressure off. My family gets a lot of support, too.
The diagnosis was six years ago and I’m still here. I have managed to get through everything I wanted to do, and now I’m just adding things to the list. After chemotherapy, I had hormone treatment, and because it was easier on my body I was able to do things like visiting Australia. I’ve run a marathon and I’ve been writing a column for my local paper, The Falkirk Herald. After my diagnosis, I thought that I’d never get to plan my own wedding, just my funeral, but I got married last year – it was a really special day.
A lot of people say, “I know what you’re going through”, but they don’t really. Through Maggie’s I’ve made a friend, Leslie, who’s in the exact same position as me, and it’s nice to be able to speak to somebody like her. One of the worst things is that you feel out of control of what’s happening to your body, and that time’s ticking away.
My outlook on life has changed hugely. Because I’ve spent so many days in bed and not feeling great, I really appreciate feeling good. I appreciate every day I’m given and I want to be surrounded by nice people, enjoying life rather than putting things off. Just going for a long walk with my dog is something that means a lot to me.
I’ve had a lot of different treatments and am probably starting to run out of them. Things have been better than the doctors thought, but I’m still realistic. Every extra birthday is special.
Complete Article ↪HERE↩!
—And How Can You Prevent It? Here’s What Experts Say
Frequent expressions of anger, sadness, and frustration are possible signs of caregiver burnout.
According to Rosalynn Carter, former first lady of the US, there are only four kinds of people in the world: “those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” As a decades-long champion for the rights of US caregivers, Carter knows what she is talking about.
There are now an estimated 53 million unpaid caregivers—individuals who care for their elderly, chronically ill, or disabled loved ones—across the country, according to the most recent data from AARP. That means one in five adults in the US acts as a caregiver.
With many families unable to pay for professional care, assuming the role of caregiver is often a necessity rather than a choice. “Families are expected to provide extraordinary care to people with serious illnesses—in most cases without access to disease education, an assessment of their own needs and abilities, [and] the skills to manage complex medical regimes or challenging behaviors and functional declines associated with, for instance, a person living with dementia,” Laura N. Gitlin, PhD, an applied research sociologist and dean of the College of Nursing and Health Professions at Drexel University in Philadelphia, tells Health.
And that can be hard, which means that those who care for their parents, siblings, children, or partners might experience caregiver burnout.
What is caregiver burnout?
A caregiver helps their loved one with daily activities like preparing meals, running errands, bathing, and performing medical tasks such as setting up tube feedings and giving medications. And as if that’s not enough, they often bear the weight of other types of stress, like having to deal with finances and manage doctor appointments for their loved one.
This collective stress is often referred to as caregiver burnout, and it’s all too common, according to Gitlin. “It’s a real phenomenon and shouldn’t be ignored,” she says. “It’s when a caregiver reaches a state of physical, emotional, and mental exhaustion due to ongoing (and in most cases extraordinary) and constant care responsibilities.”
Caregivers who reach this point may feel hopeless and have negative feelings about their situation. If it’s not addressed, it can lead to depressive symptoms, warns Gitlin.
What causes caregiver burnout?
The possibilities are wide—basically, anything you perceive as a stressor in your role as caregiver can lead to caregiver burnout, Martinique Perkins Waters, PhD, assistant professor in the Department of Behavioral Sciences at the University of West Alabama, tells Health.
The burnout could be sparked by the extra financial expenses due to the medical bills of your loved one’s care or all the factors that go into managing medical care, such as scheduling appointments, talking with insurance companies, getting to appointments, refilling prescriptions, and advocating to see specialists. The burnout could be triggered by the emotional toll of watching someone you love in pain and needing to provide constant support to them. Or, maybe the burnout stems from the frustration of feeling like you are losing your own identity as your career, hobbies, and personal goals may be shifted or even stopped due to your caregiving role.
Caregiver burnout often develops after not getting the help you need or not having an opportunity for any respite—or time for yourself—to recover from your care responsibilities, adds Gitlin. Being a caregiver for a loved one can make it difficult to switch “off” from your role, making it hard to find time for sufficient sleep and positive lifestyle behaviors like exercising.
While burnout can happen in any caregiving situation, somebody providing care for a person living with dementia may be at particular risk, Andrea Gilmore-Bykovskyi, PhD, assistant professor at the University of Wisconsin-Madison School of Nursing, tells Health. “Unfortunately, caregivers of people experiencing dementia in particular are often under-prepared and under-supported in their caregiving roles,” she says. “Knowing when, where, and how to seek help can be overwhelming, which can further compound the strain caregivers may be experiencing. It is often more challenging later in the disease course, when the needs of the person with dementia may be more challenging to meet.”
What are the signs and symptoms of caregiver burnout?
Some of the signs of caregiver burnout are very clear, according to Perkins Waters. “Frequent expressions of anger, sadness, and frustration are big red flags, especially when you don’t usually react in this manner,” she says.
Other signs are less clear, as they may manifest as symptoms that look like common chronic illnesses. This may be especially true depending on race. For example, research led by Perkins Waters and published in The Journals of Gerontology found that while African American caregivers are less likely to report being burdened by their caregiving role, the group is actually more likely to have physical manifestations of their caregiving burden, such as increased blood pressure, complications with other chronic illnesses, and cardiovascular issues. “We also know that these issues occur more frequently in the African American population in general so it can get overlooked as a sign of caregiver burnout,” Perkins Waters points out.
Symptoms of depression and anxiety are also very common. “If you are experiencing hopelessness, changes in sleep and/or eating habits, loss of interest in things you usually enjoy, lack of motivation, and feelings of overwhelm or general distress, it is possible you have reached that burnout point,” Perkins Waters says.
How can you prevent caregiver burnout?
Because its repercussions can be severe, preventing burnout is crucial. Perkins Waters’s research found that caregivers who felt that they were under a lot of strain had poorer health outcomes compared to caregivers who felt little or no strain.
“A major contributor to caregiver strain, and ultimately burnout, is the lack of easily accessible systems and resources that support caregivers in these roles,” says Gilmore-Bykovskyi. “For these reasons, it is really important for caregivers to seek support early and often, and even before they feel they need them—so they get help long before the point of burnout.”
This might mean joining a support group, creating a schedule to give you time to yourself every day, seeking professional help from a counselor, or simply taking another person up on their offer of help. If you have a solid support network and regular breaks from your caregiving responsibilities, you can reduce your risk of getting to the point of complete burnout.
“Respite is extremely important,” Perkins Waters says. “If possible, ask members of your family to assist with care. Even if they’re not close enough for day-to-day respite, they can make phone calls for services, search the internet for resources, or even have food delivered to the house so you have one less thing on your to-do list. If you attend a faith-based organization, more than likely there are members or a ministry that can stay with your loved one briefly, help with transportation, assist with groceries, or just come by to talk.”
A good starting point is your local agencies that advocate for senior services. “People often think of the Department of Human Services [DHS] as mainly for child services, but there are adult service programs as well,” says Perkins Waters. The DHS may be able to connect you with resources like adult day care programs, which support your loved one for a short time while you run errands or just go back home to rest.
There may also be non-profits or community organizations in your area that offer respite care. For instance, Alabama Lifespan Respite Resource Network offers vouchers that caregivers use to pay individuals to be with their loved ones in the home for short-term relief and provides resources for mental health counseling and caregiver support groups.
Even if you get this help for your caregiver duties, you still must make it a point to care for yourself, according to Perkins Waters. This means going to routine doctor appointments, talking with a counselor, finding a support group, hanging out with friends, making time for physical activity—in short, all the physical and mental care items we know we are supposed to do.
This is particularly important for caregivers who are parents. As Perkins Waters notes, a lot of caregivers juggle raising children and caring for aging parents. “You may go into the caregiver role expecting ease, as you have raised young children,” she says. “But it is an entirely different situation when you are older yourself and you are caring for an adult who likely raised you. There is more history and experience on both sides; this is a unique journey and taking care of your health will help better prepare you for it.”
If you have the means to pay for it, Gitlin highly recommends at least one consultation with a geriatric social worker who specializes in referral and linkages. The social worker can help you assess your caregiving situation, deal with stressors, and come up with a plan. Being a caregiver is never going to be easy, but it can be easier with the right help and support in place.
Complete Article ↪HERE↩!
Due to the COVID-19 pandemic, Melbourne man V Srikanth had to support his mother in India from afar as she neared the end of her life. This is what he learned.
By V Srikanth
And so when I got the call from my brother-in-law at 4 o’clock on a Thursday afternoon to let us know she had suffered a serious stroke, my brain snapped into clinical gear fairly quickly.
I was in Australia and she was near Bengaluru, and so began the very strange experience of helping my mother through her illness and to have a good death from afar in the middle of a global pandemic.
I was in Australia and she was near Bengaluru, and so began the very strange experience of helping my mother through her illness and to have a good death from afar.
I come from a medical family. I trained to be a physician and a geriatrician and I think I can make very clear decisions. My father, my sister, my brother and my brother-in-law are all doctors too. However, even for us there were many difficult decisions to be made. There were points where we were second-guessing ourselves and questioned whether we were doing the right thing.
In my job I have seen dozens of advanced-care plans. They are a good thing. But even the best advanced-care plans come unstuck. People’s wishes may not always be communicated well, and many families struggle with letting their loved ones go. Some want everything to be done until the very end, but what ‘everything’ is, might be viewed differently by different people. You can’t apply the same advanced-care plan to every scenario.
Early on my mother briefly regained some consciousness, but shortly thereafter she slipped back into an unconscious state.
I had seen the brain scans, I knew the odds. Neurosurgery was an option, but the likelihood of her surviving it and recovering to live an active life with good quality was extremely low. And Amma was in a large hospital in the middle of the Covid crisis.
My siblings and I decided it would be best to get our mother out of that hospital environment. We were fortunate in that we knew of a small primary care facility where she could have access to nurses and a physician.
What many people don’t know is that a formal system of palliative care is rare in India and is not routinely incorporated into healthcare. In fact, the medications that we use in Australia for palliative care like sedatives and opiates are very tightly regulated in India and not readily available for good palliative care.
I was lucky enough to be able to speak with my colleagues here about the best practices we might use, even if those best practices were not known in India, and provide my siblings with advice. However, we still all had to be on the same page and that is always the tricky part.
When would we stop providing food through a tube? When would we stop giving intravenous fluids? What is the right amount of care to keep someone comfortable but also allow them to die?
If you don’t know about palliative care and have not talked about death, these decisions can be challenging. And they are made harder when you don’t know the patient’s wishes or have a desire to ‘fix’ everything with every option of treatment available, however futile they may be.
With my family it was different. We were in agreement on most things and for the most part we knew what our mother would have wanted us to do. She had held separate conversations with all of us about what she would have expected for herself. And my father, tough as it was for him, also accepted the reality of how Amma was – and trusted us to help him make the right decisions.
And this is what I would say to anyone going through a similar situation. Ask yourself, to the best of your knowledge, how would your relative have wanted to live on the other side of a significant medical intervention when faced with a seriously disabling or terminal illness? Ask the doctors what are all the options and what are the specific likely outcomes of each?
When the time came for my mother it was extremely peaceful, with my family by her side, and no discomfort. She would have been 80 this year, a wonderful person and she was really clear in her mind, always keeping people connected. In many ways, as she always did, she made it easier for us at the end.
Complete Article ↪HERE↩!
By Judith Graham
For decades, Americans have been urged to fill out documents specifying their end-of-life wishes before becoming terminally ill — living wills, do-not-resuscitate orders, and other written materials expressing treatment preferences.
Now, a group of prominent experts is saying those efforts should stop because they haven’t improved end-of-life care.
“Decades of research demonstrate advance care planning doesn’t work. We need a new paradigm,” said Dr. R. Sean Morrison, chair of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York and a co-author of a recent opinion piece advancing this argument in JAMA.
“A great deal of time, effort, money, blood, sweat and tears have gone into increasing the prevalence of advance care planning, but the evidence is clear: It doesn’t achieve the results that we hoped it would,” said Dr. Diane Meier, founder of the Center to Advance Palliative Care, a professor at Mount Sinai and co-author of the opinion piece. Notably, advance care planning has not been shown to ensure that people receive care consistent with their stated preferences — a major objective.
“We’re saying stop trying to anticipate the care you might want in hypothetical future scenarios,” said Dr. James Tulsky, who is chair of the department of psychosocial oncology and palliative care at the Dana-Farber Cancer Institute in Boston and collaborated on the article. “Many highly educated people think documents prepared years in advance will protect them if they become incapacitated. They won’t.”
The reasons are varied and documented in dozens of research studies: People’s preferences change as their health status shifts; forms offer vague and sometimes conflicting goals for end-of-life care; families, surrogates and clinicians often disagree with a patient’s stated preferences; documents aren’t readily available when decisions need to be made; and services that could support a patient’s wishes — such as receiving treatment at home — simply aren’t available.
But this critique of advance care planning is highly controversial and has received considerable pushback.
Advance care planning has evolved significantly in the past decade and the focus today is on conversations between patients and clinicians about patients’ goals and values, not about completing documents, said Dr. Rebecca Sudore, a professor of geriatrics and director of the Innovation and Implementation Center in Aging and Palliative Care at the University of California-San Francisco. This progress shouldn’t be discounted, she said.
Also, anticipating what people want at the end of their lives is no longer the primary objective. Instead, helping people make complicated decisions when they become seriously ill has become an increasingly important priority.
When people with serious illnesses have conversations of this kind, “our research shows they experience less anxiety, more control over their care, are better prepared for the future, and are better able to communicate with their families and clinicians,” said Dr. Jo Paladino, associate director of research and implementation for the Serious Illness Care Program at Ariadne Labs, a research partnership between Harvard and Brigham and Women’s Hospital in Boston.
Advance care planning “may not be helpful for making specific treatment decisions or guiding future care for most of us, but it can bring us peace of mind and help prepare us for making those decisions when the time comes,” said Dr. J. Randall Curtis, 61, director of the Cambia Palliative Care Center of Excellence at the University of Washington.
Curtis and I communicated by email because he can no longer speak easily after being diagnosed with amyotrophic lateral sclerosis, an incurable neurologic condition, early in 2021. Since his diagnosis, Curtis has had numerous conversations about his goals, values and wishes for the future with his wife and palliative care specialists.
“I have not made very many specific decisions yet, but I feel like these discussions bring me comfort and prepare me for making decisions later,” he told me. Assessments of advance care planning’s effectiveness should take into account these deeply meaningful “unmeasurable benefits,” Curtis wrote recently in JAMA in a piece about his experiences.
The emphasis on documenting end-of-life wishes dates to a seminal legal case, Cruzan v. Director, Missouri Department of Health, decided by the Supreme Court in June 1990. Nancy Cruzan was 25 when her car skidded off a highway and she sustained a severe brain injury that left her permanently unconscious. After several years, her parents petitioned to have her feeding tube removed. The hospital refused. In a 5-4 decision, the Supreme Court upheld the hospital’s right to do so, citing the need for “clear and convincing evidence” of an incapacitated person’s wishes.
Later that year, Congress passed the Patient Self-Determination Act, which requires hospitals, nursing homes, home health agencies, health maintenance organizations and hospices to ask whether a person has a written “advance directive” and, if so, to follow those directives to the extent possible. These documents are meant to go into effect when someone is terminally ill and has lost the capacity to make decisions.
But too often this became a “check-box” exercise, unaccompanied by in-depth discussions about a patient’s prognosis, the ways that future medical decisions might affect a patient’s quality of life, and without a realistic plan for implementing a patient’s wishes, said Meier, of Mount Sinai.
She noted that only 37% of adults have completed written advance directives — in her view, a sign of uncertainty about their value.
Other problems can compromise the usefulness of these documents. A patient’s preferences may be inconsistent or difficult to apply in real-life situations, leaving medical providers without clear guidance, said Dr. Scott Halpern, a professor at the University of Pennsylvania Perelman School of Medicine who studies end-of-life and palliative care.
For instance, an older woman may indicate she wants to live as long as possible and yet also avoid pain and suffering. Or an older man may state a clear preference for refusing mechanical ventilation but leave open the question of whether other types of breathing support are acceptable.
“Rather than asking patients to make decisions about hypothetical scenarios in the future, we should be focused on helping them make difficult decisions in the moment,” when actual medical circumstances require attention, said Morrison, of Mount Sinai.
Also, determining when the end of life is at hand and when treatment might postpone that eventuality can be difficult.
Morrison spoke of his alarm early in the pandemic when older adults with covid-19 would go to emergency rooms and medical providers would implement their advance directives (for instance, no CPR or mechanical ventilation) because of an assumption that the virus was “universally fatal” to seniors. He said he and his colleagues witnessed this happen repeatedly.
“What didn’t happen was an informed conversation about the likely outcome of developing covid and the possibilities of recovery,” even though most older adults ended up surviving, he said.
For all the controversy over written directives, there is strong support among experts for another component of advance care planning — naming a health care surrogate or proxy to make decisions on your behalf should you become incapacitated. Typically, this involves filling out a health care power-of-attorney form.
“This won’t always be your spouse or your child or another family member: It should be someone you trust to do the right thing for you in difficult circumstances,” said Tulsky, who co-chairs a roundtable on care for people with serious illnesses for the National Academies of Sciences, Engineering and Medicine.
“Talk to your surrogate about what matters most to you,” he urged, and update that person whenever your circumstances or preferences change.
Most people want their surrogates to be able to respond to unforeseen circumstances and have leeway in decision-making while respecting their core goals and values, Sudore said.
Among tools that can help patients and families are Sudore’s Prepare for Your Care program; materials from the Conversation Project, Respecting Choices and Caring Conversations; and videos about health care decisions at ACP Decisions.
The Centers for Disease Control and Prevention also has a comprehensive list of resources.
Complete Article ↪HERE↩!
The ‘Health Your Self’ author’s advice on how to help your loved one get the best care
When the nurses were a few moments late giving Aurora Greenway’s daughter, Emma, pain medication for cancer in the 1983 film classic, “Terms of Endearment,” Aurora (played by Shirley MacLaine) let them have it. “My daughter is in pain! Give her the shot!”, she belted out in an unforgettable fist-banging, gyrating fury.
And then, scaling to the top of her lungs: GIVE MY DAUGHTER THE SHOT! At that moment, she became the caregiver from hell.
I’ve been that kind of caregiver myself — and I encourage you to do the same when necessary, although it’s best to tone down the histrionics.
Caregiver From Hell: Part 1
My first time going (nearly) full Aurora was in 2016 when I took my then 90-year-old mother Estelle to the ER for a severe allergic reaction that caused her lips and tongue to swell so enormously I thought her airways would be compromised.
I started screaming, threatening at 2 a.m. to call the chief resident, while dialing my mother’s well-regarded cardiologist.
It was July, a time of year when the new medical residents begin working. One of them gave my mother a shot of epinephrine, a powerful adrenaline medication known to bring down swelling — but which could have killed her.
Epinephrine punches up the heart rate, something my mother with her poorly functioning heart valve could not afford.
Repercussions for her heart would have happened quickly, so I relaxed for a moment, but then saw the newbie about to administer Round Two. I started screaming, threatening at 2 a.m. to call the chief resident, while dialing my mother’s well-regarded cardiologist. I told them I simply would not let the new resident and the rest of the team do this.
I shouted that I would sign a waiver. I even offered my own idea of what to administer instead, prednisone, a well-known anti-inflammatory. Whatever it took.
And then, probably fed up, they stopped.
The doctors admitted my mother for a night for observation. I was so concerned they’d try this dangerous stunt again that I sat in a chair by my mother’s bed all night. They even administered the prednisone I suggested (proud of myself). She went home the next day.
Caregiver From Hell: Part 2
Years later, I ramped up my Caregiver From Hell character again for my 15-year-old daughter Anna when both of us were in the ER after a car accident. This time I couldn’t scream. The airbag released during the crash had broken my sternum, and just breathing was painful.
So, I whisper-growled insistence from the gurney. At times, I pleaded.
The trauma team in the pediatric wing of the ER had wanted to give my daughter a CT scan (a medical imaging technique using X-rays) for what seemed to be a minor injury to her neck. I had just finished writing, literally at 4:30 p.m. that afternoon, a chapter about the potential perils of unnecessary CT scans for my book “Health Your Self” (which Next Avenue excerpted in “Should I Get That CT Scan?”)
Radiation from CT scans can be hundreds of times that of conventional X-rays. Cancer can take 20 or more years to develop if DNA gets irreparably damaged, so kids, with their long life still in front of them, are particularly vulnerable to any consequences — however rare.
Most of us when faced with the unpredictable vicissitudes of illness will try to wrest the situation from uncertainty.
I kept talking about the research I did, like some smartiepants. I didn’t want my daughter to undergo a CT scan unless it was absolutely necessary. I begged for a non-radiation emitting MRI instead (MRIs use a strong magnetic field and radio waves to create an image).
The team relented, likely thanks to a national campaign called Image Gently, something I kept reminding them of, which urges prudence when it comes to CT scans for kids.
And it was a success. The MRI showed that my daughter had compression fractures in her vertebrae. As it turned out, MRIs are the best way to find these types of fractures.
Why do we do it? Why do we caregivers insist, cajole and pour ourselves into the plight of the ones we love?
Watching them suffer is often harder than it would be to suffer ourselves. We become driven to do something, anything to make it stop. Many times, those who become caregivers from hell are people accustomed to exerting control elsewhere in life. But also, most of us when faced with the unpredictable vicissitudes of illness will try to wrest the situation from uncertainty.
How to Get the Medical Care Your Loved One Needs
It’s also a biological imperative, an instinctual need to protect and help an imperiled loved one. Even if we go slightly off the rails in the process.
But how can we modulate our instincts so instead of ranting, we negotiate effectively with doctors to get the best possible care?
My advice: prepare in advance to reduce tensions later on.
If you’re taking care of an older person, maybe your parents, it is critical to have them sign an advance care directive, also called a living will. This is a legal document that spells out the actions they want taken if they become too ill or incapacitated to make that clear at the time. Not so incidentally, it provides you with a set of guard rails, so you know how far to go when advocating for them.
You can also de-escalate some friction with doctors by having your parents or other older adults in your life sign a document called a health care proxy. That authorizes someone else — like you — to make decisions for them.
Doctors hate what are called “triad” encounters where everyone is weighing in at once and they don’t know who is the rightful decision maker.
Having one appointed voice will help foster a kinder, gentler approach to caregiving.
To ease caregiving for your teenage or young-adult kids, you — and they — must stay up to date on any ongoing problem such as asthma or stomach woes. You might also want to check out local hospitals that have a pediatric wing (the age limit is usually 21, sometimes older). That way, you can feel less anxious, and be less likely to lose it, knowing you are in the hands of specialists who see kids their age all the time.
Now is the time to find an expert whom all of you trust, and who can talk, with genuine clout, to emergency room or other physicians as an advocate should the need arise.
Still, there is no shame in loudly sticking up for a loved one. If you think something isn’t going right, trust your instincts, keep up the pressure and get answers.
And if you must, channel Aurora.
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Changing the way we think and talk about death could improve end-of-life health care. Recent research suggests encouraging people to view death differently, as a positive and natural part of life, it could help them make better decisions as they prepare for what is inevitably to come.
For many people, especially if someone has recently experienced loss, giving up the ghost is one of the most taboo topics. This is indicated in the words people choose to use when describing their feelings and insights into death or dying, researchers say. People who are not comfortable with the topic are more likely to choose emotional words such as “fear or scary,” whereas those who are more ready to meet their maker will use terms like “inevitable or natural.”
“In an aging population, when our elders and terminally ill are often cared for by health professionals in residential care rather than in the home, we can go through life without really discussing or witnessing the end of life. Tackling and changing these perspectives will help the community to plan for and manage future needs and expectations of care at end-of-life, and improve patient and family care, including greater preparedness for death. This can also help develop future health services,” says Dr. Lauren Miller-Lewis, study lead author of Flinders University in Australia, in a statement.
In a recent study, researchers surveyed 1,491 people to determine what language they used to describe their feelings when it came to dying. Participants were then enrolled in a six-week open online course dubbed Dying2Learn. The course, which ran from 2016 to 2018 and in 2020, encouraged people to have open conversations about death and dying.
The language participants used when discussing death before and after the course was analyzed using automated sentiment analysis. By the end of the course, participants were able to use more pleasant, calmer and in-control words to express themselves on the topic, researchers say.
“Words aren’t neutral, so understanding the emotional connotations tied to words we use could help guide palliative care conversations,” says Dr. Miller-Lewis. Younger participants showed the greatest increase in positive vocabulary, including pleasantness and dominance over the topic.
“It shows how the general public can gain an acceptance of death as a natural part of life by learning how to openly discuss and address these feelings and attitudes,” adds co-author Dr. Trent Lewis.
Differences in how participants talked about death with others rather than just explaining their own feelings were also observed by the researchers. When talking about someone else’s loss, participants were more likely to use words such as “sad,” “fear,” scary and loss. However, when it was about themselves they employed less emotionally negative words like “inevitable,” “peace,” and “natural.”
“The assumption was that others feel more negatively about death than they do themselves. This could impact on our willingness to start conversations about death with others,” says Dr. Lewis. “Do we avoid it because we think others will get upset if we bring it up, and does this then leave important things unsaid?“
The findings are published in the journal PLOS One.
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By Blake Farmer
This time, it didn’t take much persuading for Mary Murphy to embrace home hospice. When her mother was dying from Alzheimer’s disease in 2020, she had been reluctant until she saw what a help it was. And so when her husband, Willie, neared the end of his life, she embraced hospice again.
The Murphys’ house in a leafy Nashville neighborhood is their happy place — full of their treasures.
“He’s good to me — buys me anything I want,” she says, as she pulls a milky glass vase out of a floor-to-ceiling cabinet with mirrored shelves.
Willie bought Mary the display case to help her to show off all the trinkets she picks up at estate sales.
Down the hall, Willie lies in their bed, now unable to speak. His heart is giving out.
“You gonna wake up for a minute?” she asks as she cradles his head. She pats his back while he clears his throat. “Cough it out.”
Mary has been the primary caregiver for her husband, but she gets help from a new hospice agency in Nashville that is focused on increasing the use of comfort care at the end of life by Black families. Heart and Soul Hospice is owned and operated by people who share the same cultural background as the patients they’re trying to serve.
In their application to obtain a certificate of need in Tennessee, the hospice owners made it clear that they are Black and that they intend to serve everyone but will focus on African Americans, who are currently underserved. Tennessee data show that in Nashville, just 19% of the hospice patients are Black though they make up 27% of the population.
Though the area already had numerous hospice agencies, regulators granted the permission, based primarily on the value of educating an underserved group.
In Mary Murphy’s first experience with hospice, her mother had suffered from dementia for decades, yet still when transitioning to hospice came up with her mother, Murphy had many concerns. She felt like she was giving up on her mom.
“My first thought was death,” she says.
National data shows Black Medicare patients and their families are not making the move to comfort care as often as white patients are. Roughly 41% of Black Medicare beneficiaries who died in 2019 were enrolled in hospice, compared with white patients for whom the figure is 54%, according to data compiled annually by the National Hospice and Palliative Care Organization.
Murphy’s mother survived nearly three years on hospice. The benefit is meant for those in the last six months of life, but predicting when the end will come is difficult, especially with dementia. Hospice provides palliative care for the dying and support for caregivers for a long as the process lasts.
Murphy did most of the caregiving — which can be overwhelming — but hospice helped with a few baths a week, medication in the mail and any medical equipment they needed.
And most important to Murphy was the emotional support, which came mostly from her hospice nurse.
“Wasn’t no doctor going to come here, hold my hand, stay here until the funeral home came for her,” she says about the day her mother died.
This year, on the day after Thanksgiving, Willie Murphy died. And the same hospice nurse was at the Murphy home within minutes. She’d already stopped by that morning to check on him and returned as soon as Mary called and told her he wasn’t breathing.
“If you don’t feel like, ‘Oh my God, thank God I have hospice,’ if you can’t say that, then we’re doing something wrong,” says Keisha Mason, who is Heart and Soul’s director of nursing.
Mason, like Murphy, is Black and says that in her view, there’s nothing fundamental keeping Black patients from using hospice except learning what the service can offer and that it’s basically free to patients — paid for by Medicare, Medicaid and most private health plans.
“I say to them, ‘If you see a bill, then call us, because you should not,’ ” she says.
As Mason has helped launch this new hospice agency, she’s begun using new language, calling hospice more than a Medicare benefit. She describes it as an entitlement.
“Just as you are entitled to unemployment, as you are entitled to Social Security, you are entitled to a hospice benefit,” she says.
The investors in Heart and Soul include David Turner, owner of CNS Hospice in Detroit, Nashville pastor the Rev. Sandy McClain, and André Lee, who is a former hospital administrator on the campus of Nashville’s Meharry Medical College, a historically Black institution.
Lee and Turner also started a Black-focused hospice agency in Michigan and have plans to replicate the model in other states.
Lee says more families need to consider home hospice as an alternative for end-of-life care. Nursing homes are pricey. And even with Medicare, a hospital bill could be hefty.
“You’ll go in there and they’ll eat you alive,” he says. “I hate to say [something] bad about hospitals, but it’s true.”
Hospice research hasn’t come up with clear reasons why there’s a gap between white and Black families’ use of the benefit. Some speculate it’s related to spiritual beliefs and widespread mistrust in the medical system due to decades of discrimination.
The hospice industry’s national trade group, the NHCPO, released a diversity and inclusion toolkit and a guide for how to reach more Black patients this year. It recommends connecting with influential DJs and partnering with Black pastors. But also just hiring more Black nurses.
Lee says it’s not overly complicated.
“A lot of hospices don’t employ enough Black people,” he says. “We all feel comfortable when you see someone over there that looks like you.”
Well-established hospice agencies have been attempting to minimize any barriers with their own diversity initiatives. Michelle Drayton of Visiting Nurse Service of New York says her large agency has been meeting with ministers who counsel families dealing with failing health.
“Many of them did not fully understand what hospice was,” she says. “They had many of the same sort of misperceptions.”
Whether it’s an upstart hospice company or one of the oldest in the country, everyone still has a lot of end-of-life educating to do to bridge the racial gap, Drayton says. “We’re not just handing out a brochure,” she adds.
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