Ordering up more tests and surgeries for dying patients is easy. Getting patients the end-of-life care they deserve takes much more effort.
My 92-year-old father fell one Saturday night a few months ago. My mother could not pick him up. Her brother was not answering his cellphone, so she called 911. An ambulance crew brought him to the hospital.
The emergency-room physician ordered a CT scan. A spot on the scan worried him, so he ordered an MRI, which confirmed that a tumor the size and shape of a pear was occupying the frontal lobes of his brain. Meanwhile, a chest X-ray gave the physician some reason to suspect pneumonia—the image of the lungs looked cloudy, though it lacked the focal infiltrates that usually signify that condition—so he admitted my father to the hospital.
I took the first flight from Washington, D.C., and arrived in his room at a suburban-Chicago hospital at about 9 a.m. He was sitting in a chair, and all sorts of white wires were emerging from under his flimsy hospital gown. His index finger, because of the oxygen monitor attached to it, glowed like E.T.’s. Still, my father was acting like himself. When I entered the room, he mischievously needled me: “How are you doing, schmucko?”
The monitor above his bed showed a regular heart rate and oxygen saturation of 100 percent. The IV pole towering over him showed two empty bags of antibiotics.
I squeezed my dad’s hand, and we talked for about 20 minutes. Then I stepped out of the room to find the doctor to ask some questions. Standing at the nurses’ station, I was introduced to a neurosurgeon and a neuro-oncologist, who were ready to talk to me about my father’s condition and treatment options.
My father had a large brain tumor that could not be cured and would end his life. No neurosurgeon or oncologist could change the inevitable. Especially in light of his age, any intervention that involved drilling into his skull and biopsying or removing part of such a big tumor would only worsen his quality of life. We didn’t want to interfere with him talking with his children and grandchildren and playing with his great-grandchildren during the time he had left.
But no one had taken the time to ask him about his wishes regarding medical treatment, even though he was competent to make decisions and was himself a physician. No one asked my mother and brother, who were with him in the emergency room and at the hospital, if he had an advance-care directive or wanted to have a do-not-resuscitate order. My father, a pediatrician, was one of those doctors who hated getting any medical care. Fifteen years before, he had walked around for three weeks insisting that the pain at the bottom of his rib cage was just acid indigestion. Eventually, he consented to go to his internist and was diagnosed with a heart attack, which required a bypass operation. Everything about the way he’d lived meant he certainly did not want any brain surgery with no chance of a cure. He wanted to die at home having shared his final days with his family.
Since the mid-1980s, I have worked to make this type of end-of-life care possible. I am a physician too. Once my father was admitted to a hospital, it took all my expertise and experience to arrange the kind of care he needed—and prevent the medical system from taking over and prescribing unnecessary interventions.
It was easy for the hospital physician to call a neurosurgeon and neuro-oncologist and for them to assess my father early on a Sunday morning before I arrived. But when I asked if we could get my father a palliative-care consult on Sunday, the answer was a definitive no. All we got was the number of the hospital’s palliative-care service; we had to call the next day, during normal business hours, to arrange a future consultation.
It was easy for my mother to call 911 and have him transported to the hospital. But if he fell again, there would be no 911-like number for my mother to call for urgent assistance short of EMTs and ambulances.
It would be easy for the emergency-room physician to admit my father again, and even put him in the intensive-care unit. But no one suggested that he and my mother get mental health care or see a grief counselor to cope with his new terminal diagnosis.
The hospital was no place for my father to spend his last days. To thwart the medical system’s momentum to lard on ever more costly, unnecessary, and unwanted interventions—and to convince the medical staff we were serious about no—I took my father’s oxygen monitor off his finger, disconnected his cardiac monitor, insisted that the nurse remove his IV, and asked the physician to discharge him as soon as possible.
Beyond a suggestion that we find a home-care agency to call, the hospital offered no assistance in getting him help at home. Ironically, the aide transporting him out of the hospital volunteered that she knew someone who was available to provide home care. Through my father’s former nurse and someone she knew, we ended up getting a talented and kind set of cousins—immigrants from the Philippines—who were able to provide care.
Despite the medical system, my father did avoid further trips to the hospital, an ICU admission, and more antibiotics and machines. He spent the rest of his time at home and was able to say goodbye to everyone. And being at home was cheaper. We still don’t have all the bills, but the tab just for about 12 hours in the hospital came to $19,276.83. In contrast, the more than 200 hours of home care he got over the next 10 days cost only $6,093.
Many Americans are puzzled about why end-of-life care costs are so high, and why physicians cannot seem to reduce them. My father’s story is the answer.
It has less to do with physicians’ and hospitals’ financial incentives to admit more patients and perform more medical interventions, and more to do with the effort required to order and provide human care. For providers, ordering tests and consultations and prescribing antibiotics is easier than listening to and diagnosing the particular needs of the person in front of them. It is easier for the medical system to marshal all sorts of costly interventions—MRI scans, hospital admissions, neurosurgeons, cancer chemotherapy, and the rest—but harder, if not impossible, to accept the inevitable and provide symptom management, grief counseling, and home care to patients and their family. Until the system takes account of the whole patient and provides the whole package of humane care as the default—so that it’s routine and made available 24/7 with one physician’s order, just as chemotherapy or an MRI would be—Americans will not be able to finally change end-of-life care and reduce those costs.
A terminal diagnosis is inherently traumatic for patients and their families. My father’s experience at home before his death needs to become the standard of care. And not just for patients with pushy sons who have medical training and know how to speak with physicians, disconnect cardiac monitors, and firmly refuse the interventions that our health-care system is so predisposed to offer.
Complete Article ↪HERE↩!
By GARRY OVERBEY
A 94-year-old Venice man allegedly shot and killed his wife, who suffered from dementia. He then tried to turn the gun on himself, authorities said, but the weapon jammed. He told the 911 dispatcher, “I’ve had a death in the family.”
Cheryl Green, 73, lost her husband of 54 years in July after a long struggle with Lewy body dementia.
When Green read about the arrest of Wayne S. Juhlin — currently the oldest inmate at the Sarasota County Jail, charged with first-degree murder — she felt sympathy for him — and guilt, for her husband.
“Unless you’ve walked in his shoes, you don’t know what’s going on,” she said. “He (Juhlin) probably saw something in her condition, that killing her was a mercy.”
The would-be murder/suicide made her think of her husband, and the horror of his final days in a Lake Placid nursing home.
“If I had the means and the courage, I would have ended his misery,” Green said.
She contacted the Sun following Juhlin’s arrest, objecting to the narrative put forth by authorities that help for caregivers is readily available but ignored.
“It sounded as if there were many options open to the man and he just didn’t know they were there. The options are few for individuals who don’t have a lot of money,” she said.
Had her husband been accepted into a long-term care facility, she said, she would have depleted their savings in two months.
A former Washington state employee with a degree in social work, Green said she’s not naive about Medicare and Medicaid and how easily people can slip through the cracks of a bureaucracy. But she was stunned to find herself marginalized in Florida’s elder care system.
“If you’re indigent and you need long-term care, you can get Medicaid,” she said. “But if you’re in the middle — if you’re not wealthy enough to afford $3,000 to $5,000 a month (for nursing care) — you’re stuck.”
Through the looking glass
Cheryl and Drew Green both grew up in upstate New York. High school sweethearts, they met while working in the same grocery store and married while still in their teens.
They moved to Seattle, where she got her master’s degree in special vocational education, he opened his own business as an electrician, and they raised their two children. She worked for the state, running and developing programs for people with developmental disabilities and mental health issues.
Drew was extremely handy and could do almost anything that needed doing around the house.
“He was an excellent craftsman,” Green said. “People liked him because he was so good at what he did.”
Around his mid-50s, things changed.
“He started making mistakes at work,” Green said. “He would say, ‘I don’t know why, but I can’t figure things out anymore.’”
The man who had once built her a backyard gazebo was now forgetting things and had trouble with basic tasks.
Doctors told them he had dementia, but it would be years before one finally diagnosed him with a specific type: Lewy body dementia. LBD is a progressive form of the disease, with visual hallucinations, that affects thinking, behavior, mood and movement. Life expectancy is usually five to seven years.
Drew couldn’t work and his business folded. Green quit her job to care for him. Seattle was too expensive under those circumstances, so she looked for a cheaper place to live. In 2010, they moved to Burnt Store Lakes in Punta Gorda.
They lived off their savings and took early Social Security benefits. As his health declined, they were relieved when he qualified for Medicare.
“He was living in an alternate reality,” she said. “He had delusions and thought he had to act on them.”
For instance, Drew once thought he could go upstairs by walking through a mirror.
His condition steadily worsened over the years.
“He still had a sense of humor. He stayed kind,” she said. “But he became really delusional and started lashing out at people.”
Drew would sometimes stay up and wander the house for three or four days at a time. He would walk into sliding glass doors.
“I was under the delusion that I could take care of him,” she said.
Green, who had been diagnosed with lupus in the last year after struggling with fatigue her whole life, was exhausted and finally reached out for help. Earlier this year, she contacted Charlotte County’s Senior Services. They agreed to send someone to help for four hours twice a week to provide respite care — giving the caregiver a break for a few hours and helping with household chores. But when the worker arrived, Green was shocked to learn she didn’t speak English. Green was handed a cell phone and told to talk to a supervisor, who would translate Green’s instructions. A second worker spoke some English, but she mainly sat and did puzzles while Drew watched.
The county’s Senior Services cannot discuss details of a specific case because of privacy, but there are limitations on help that can be provided.
“Vendors do have difficulties providing services in more remote areas of the county, weekends and evening service, and we have no vendor willing to handle heavier chore tasks,” said Deedra Dowling, manager of Charlotte County Human Services/Senior Division. “We depend on the subcontracted vendors to provide the staff for service provision and we do monitor for contract compliance. … We have had clients who have tried every worker, every agency, and finally left with no service provision as they could not be satisfied. While this scenario is extremely rare, it has happened a few times over the years. Overnight services have always been extremely difficult to staff for a variety of reasons.”
Dowling added she wishes there were “many more resources.”
Green said she needed someone to come three nights a week, and someone on call at night.
She started sleeping on the couch so she could keep an eye on the doors to make sure he didn’t leave the house.
“I didn’t understand what I needed. I thought, I’ll keep him until I can’t keep him home anymore.”
Resources were few. Her children, who live out of state, helped when they could. Neighbors helped, but Drew’s aggression scared them.
“It’s difficult to ask anybody to help restrain someone in the middle of the night.”
In May, Drew escaped through a window. Green searched the neighborhood and found him wandering the streets in his boxer shorts. The next night, he got out again. This time, she found him unconscious in the bushes near the alligator-infested lake behind their home.
She brought him to Fawcett Memorial Hospital May 19. He was placed under observation, but Medicare wouldn’t pay until he was actually admitted, which happened once he began having heart issues and his blood pressure shot up.
His decline accelerated. “He started punching people,” Green said. “He was scary aggressive.”
At Fawcett, she credits one doctor with giving her a reality check on what she knew were her husband’s last days: “He said, ‘This isn’t a fairy tale. Grandpa isn’t going to come home and be surrounded by loving grandchildren.’ He said he’ll be ranting and raving and lashing out at people.”
One night in the hospital, to keep him from jumping out of his bed, Green wrapped him in a bed sheet and held it tight.
He was beyond being helped at home. A doctor said he would need three people caring for him around the clock.
“Obviously, he was lots and lots of work wherever he went.”
She tried to get him into Tidewell Hospice, but was turned down. She said she wasn’t given a reason, only that he “didn’t meet the criteria.”
“I knew he was dying,” she said.
A hospital social worker started looking for a nursing home, but no one local would take him, Green said, “because he was aggressive and had Lewy body, and they didn’t have the experience or the staff to deal with him.”
Only two facilities in the state would take him. Online reviews for the one in Clearwater were so bad it was unthinkable, so she went with a facility in Lake Placid.
“I hoped maybe he could have some rehabilitation, maybe learn to feed himself again.”
Fawcett insisted he be transported to Lake Placid by ambulance, a $3,000 trip the hospital agreed to cover.
‘The old person’s friend’
The Lake Placid facility turned out to be worse than she could have imagined.
“The place was dirty, the staff overworked and the administration was less than helpful.”
Drew’s conditioned worsened.
“He could not feed himself or use the bathroom,” Green said. “He cried when he saw me. He was wet, dirty and being fed food he would never eat in his former life. He was frightened and tried to keep the staff away from him. He was usually put in an old wheelchair missing half its parts and was slumped to the side.”
After 20 days, the facility notified her he would be taken off Medicare because he wasn’t making progress. They would let him continue to stay there for $260 a day. Had Green agreed, “I would go through any money I had left very quickly,” to keep him in a place where “I would not keep my dog.”
“I wanted someplace stable where I could visit him, but that was not available to me at all,” she said. “I looked every day for a new place. He was terrified and I was miserable.”
Suffering from infections, pneumonia and near-continuous seizures, Drew was taken to the emergency room. From there, he was finally accepted to a hospice in Clermont, near Orlando. Green noted someone telling her pneumonia was called “the old person’s friend” — “because it takes them away when they have other diseases.”
“It was a wonderful place to be,” she said of hospice.
She was able to be with him that night. The next morning, July 16, a nurse’s aide told her he had died.
A better ending
Three months later, Drew’s last days haunt her.
“What an awful way to die — thinking you’re not safe, that you’re being attacked all the time, no help from anybody, and the nursing home didn’t want him anymore.
“To have him in that place, to see him crying and scared,” she said, shaking her head. “I’ll never get over the guilt.”
She adds: “I shouldn’t have lived in a delusional state that I could take care of him.”
If he could have gotten into a hospice earlier, she said, “his life would have had a better ending.”
Her thoughts roll back to Juhlin and others like him who took action to end a loved one’s suffering.
“I don’t think I could kill anybody, especially someone I loved. But I wish I could have ended his misery.
“It’s horrible when the person you love most, you think they’d be better off dying. My last three dogs got so sick I had to put them down. I loved those dogs. I didn’t murder them.
“I wouldn’t shoot anybody, but I might have given him too many sleeping pills.”
Green said she visits online forums for people with loved ones suffering from Lewy body dementia. But she is reluctant to participate.
“I don’t want to tell my story because I don’t want them to know how bad it’s going to be.”
She wants to be an advocate for raising awareness about the condition, and offers advice for those in similar situations.
“Don’t think that anyone is going to automatically be there to help you.”
She recommends getting an elder care attorney once it becomes clear a loved one is going to require long-term care.
“Sit down and talk about Medicare and Medicaid options, and whether you can keep your house after your loved one passes away.”
Green still owes a little money on their house, and she’s confident she can keep up with home repairs without having to take out a loan.
Nine years of Medicare “doughnut hole” expenses for Drew’s medications, as well as retiring early, ate up their savings.
Still, she’s able to get by on Social Security and her pension from Washington. Plus, she says with a little chuckle, Social Security gives her a widow’s pension — $37.91 a month.
She’s adjusting to life without her husband.
“I had a man who could do everything,” she said. “Now I’m figuring out how to do everything.”
Complete Article ↪HERE↩!
Taboos around death and dying are increasing the risk of elderly patients “on their dying journey” being subjected to unwanted and invasive medical procedures against their wishes, experts say.
By Lucy Stone
Associate Professor Magnolia Cardona, from the Gold Coast’s Bond University, has led a PhD study into the use of rapid response system treatments on elderly hospital patients nearing end of life.
Professor Cardona said the research, published in the Joint Commission Journal on Quality and Public Safety, studied the files of more than 700 patients who received calls for medical emergency teams during hospitalisation at a large Sydney teaching hospital.
A medical emergency team usually consists of two or three specialists from the intensive care unit focused on maintaining life when a patient is in a hospital ward.
The research further focused on patients aged 80 and over, and found that 40 per cent were subjected to invasive procedures such as intubation, intensive monitoring, intravenous medications, transplants and resuscitation attempts.
Ten per cent of those patients already had medical orders in place limiting treatment, or requesting do-not-resuscitate.
“Those orders … are usually issued by their doctors in consultation with families,” Professor Cardona said.
Professor Cardona said the research showed the conflict between increasingly rapid medical advances, public perception of the capabilities of medical experts to revive or prolong life, and the emotive issue of death.
The findings were similar to those of 2017 studies conducted in Europe, but Professor Cardona said the Australian researchers had expected to find a smaller percentage of such incidents.
The research found that elderly patients in their last year of life were frequent users of ambulance and hospital services, including intensive care units, and that health professionals often felt under pressure to administer “aggressive” treatments.
“Health professionals do not always fully discuss a prognosis with families, or may lack the confidence to discuss patients’ preferences for care and treatment at the end of life,” the research said.
“They may decide to continue intensive treatment based on concerns about the family’s legal or emotional reactions, or in an attempt to avoid an in-hospital death, generally perceived as a ‘failure’.”
“Often these frequently heroic medical interventions do not improve patient survival and instead prolong suffering and adversely affect the quality of death.”
The study found that while patients under 80 years of age may benefit from such aggressive techniques, patients over 80 were less likely to benefit.
Professor Cardona also said it was critical that families and elderly people, or people with terminal illnesses, had open conversations about the decisions ahead, and wrote on paper their personal wishes, or appointed someone trusted as their medical representative.
Due to techniques such as CPR being treated as a cure-all on television shows and movies, Professor Cardona said the public often had some misconceptions about the safety and appropriateness of such techniques, particularly for elderly people.
She said the research would hopefully encourage both families and medical professionals to have fresh conversations about patient needs and values, and ensure the wishes of elderly patients were respected as they neared the end of life.
Professor Cardona said she hoped medical professionals could also think critically about the “do no harm” principle when faced with patients facing death of natural causes.
“The conclusion of the study that perhaps clinicians need to take a step back when they identify these flags of imminent death and offer a different alternative of management,” she said.
“That is the pathway of care of comfort care, and that includes giving the patient pain relief, other symptom control, psychosocial support and grief counselling for the families.
“And all of these of course preceded by an honest conversation with the patient and family about the poor prognosis, the inevitability of death and the fact that not every death should be considered a failure.
“Death is just a natural part of the life cycle.”
Complete Article ↪HERE↩!
“If there is a ‘war’ on cancer, and treatments and hopes for cures are portrayed as ‘fights’ in media, then societal beliefs may push men, in particular, to fight the disease over receiving palliative care,”
A small study has found that men with cancer were less likely than women to prefer palliative care if informed that continued treatment would not be helpful.
“These findings, which could partially account for the observed gender disparities in end of life care, underscore the need for future interventions to promote palliative care services among men,” Fahad Saeed, MD, University of Rochester School of Medicine and Dentistry, and colleagues wrote in the Journal of Pain and Symptom Management.
Prior research had shown that men and those with low educational attainment are more likely to still be receiving “curative” treatments weeks prior to death and are less likely to undergo palliative care or hospice. With this study, Saeed and colleagues hypothesized that these two groups would be less favorably disposed toward palliative care.
To test this hypothesis, they used data from 383 patients that were gathered in the Values and Options in Cancer Care (VOICE) study. In this study, patients were asked about their preferences for palliative care if they had been informed by their oncologist that further treatment would not be helpful. Palliative care was explained to the patients as care intended to provide comfort and improve the quality of life but not to cure.
Included patients ranged in age from 22 to 90 years, and 55.1% were women. The majority of the patients had also attended college.
Almost 80% of patients reported that they definitely (45.2%) or possibly (33.9%) would desire palliative care if informed that further treatment would not be helpful.
Women were about three times more likely to prefer palliative care compared with men (odds ratio [OR] = 3.07; 95% CI, 1.80–5.23). These odds decreased slightly in sensitivity analyses that accounted for additional covariates and ordinal regression.
“These gender differences may be explained by gender differences in role socialization,” the researchers wrote. “Men and women adopt beliefs about gender roles that reflect prevailing social norms. These beliefs guide decisions about socially acceptable and unacceptable attitudes such as being stoic, fearless, less expressive of symptoms, and invulnerable.”
“If there is a ‘war’ on cancer, and treatments and hopes for cures are portrayed as ‘fights’ in media, then societal beliefs may push men, in particular, to fight the disease over receiving palliative care,” they continued.
In contrast, the data did not support a greater preference for palliative care among those with more education. Patients with a high school education or less and those with a college education had comparable preferences for palliative care.
“It is not very likely, therefore, that education disparities in end-of-life care can be explained by education differences in preferences for palliative care,” the researchers wrote.
In addition, the study showed that older adults were less likely than younger ones to prefer palliative treatment (OR = 0.54; 95% CI, 0.31–0.94). To explain this, the researchers suggested that older patients may have a lack of knowledge about palliative care.
“In a survey of patients across the adult age range, more than three-quarters of the sample had never heard of palliative care,” Saeed et al said.
A physician laments the often-excessive care of older adults at the end of life
In the old days, she would be propped up on a comfy pillow, in fresh cleaned sheets under the corner window where she would, in days gone past, watch her children play. Soup would boil on the stove just in case she felt like a sip or two. Perhaps the radio softly played Al Jolson or Glenn Miller, flowers sat on the nightstand, and family quietly came and went.
These were her last days. Spent with familiar sounds, in a familiar room, with familiar smells that gave her a final chance to summon memories that will help carry her away.
She might have offered a hint of a smile or a soft squeeze of the hand but it was all right if she didn’t. She lost her own words to tell us that it’s OK to just let her die, but she trusted us to be her voice and we took that trust to heart.
A day does not go by where my partners don’t look at each other and say, “How do we stop this madness?”
You see, that’s how she used to die. We saw our elderly different then.
Still the Same Person
We could still look at her face and deep into her eyes and see the shadows of a soft, clean, vibrantly innocent child playing on a porch somewhere in the Midwest during the 1920s perhaps. A small rag doll dances and flays as she clutches it in her hand. She laughs with her barefoot brother, who is clad in overalls, as he chases her around the yard with a grasshopper on his finger. She screams and giggles. Her father watches from the porch in a wooden rocker, laughing while mom gently scolds her brother.
We could see her taking a ride for the first time in an automobile, a small pickup with wooden panels driven by a young man with wavy curls. He smiles gently at her while she sits staring at the road ahead; a fleeting wisp of a smile gives her away. Her hands are folded in her lap, clutching a small beaded purse.
‘Enriched and Happy’
We could see her standing in a small church. She is dressed in white cotton, holding hands with the young man, and saying, “I do.” Her mom watches with tearful eyes. Her dad has since passed. Her new husband lifts her across the threshold, holding her tight. He promises to love and care for her forever. Her life is enriched and happy.
We could see her cradling her infant, cooking breakfast, hanging sheets, loving her family, sending her husband off to war, and her child to school.
We could see her welcoming her husband back from battle with a hug that lasts the rest of his life. She buries him on a Saturday under an elm, next to her father. She marries off her child and spends her later years volunteering at church functions before her mind starts to fade and the years take their toll and God says: “It’s time to come home.”
Adding Time but Not Life
This is how we used to see her before we became blinded by the endless tones of monitors and whirrs of machines, buzzers, buttons and tubes that can add five years to a shell of a body that was entrusted to us and should have been allowed to pass quietly propped up in a corner room, under a window, scents of homemade soup in case she wanted a sip.
You see now we can breathe for her, eat for her and even pee for her. Once you have those three things covered she can, instead of being gently cradled under that corner window, be placed in a nursing home and penned in a cage of bed rails and soft restraints meant to “keep her safe.”
She can be fed a steady diet of Ensure through a tube directly into her stomach and she can be kept alive until her limbs contract and her skin thins so much that a simple bump into that bed rail can literally open her up until her exposed tendons are staring into the eyes of an eager medical student looking for a chance to sew.
She can be kept alive until her bladder is chronically infected, until antibiotic resistant diarrhea flows and pools in her diaper so much that it erodes her buttocks. The fat padding around her tailbone and hips are consumed and ulcers open up, exposing the underlying bone, which now becomes ripe for infection.
‘We Stopped Seeing Her’
We now are in a time of medicine where we will take that small child running through the yard, being chased by her brother with a grasshopper on his finger, and imprison her in a shell that does not come close to radiating the life of what she once had.
We stopped seeing her, not intentionally perhaps, but we stopped.
This is not meant as a condemnation of the family of these patients or to question their love or motives, but it is meant be an indictment of a system that now herds these families down dead-end roads and prods them into believing that this is the new norm and that somehow the old ways were the wrong ways and this is how we show our love.
A day does not go by where my partners don’t look at each other and say, “How do we stop this madness? How do we get people to let their loved ones die?”
I’ve been practicing emergency medicine for close to a quarter of a century now and I’ve cared for countless thousands of elderly patients. I, like many of my colleagues, have come to realize that while we are developing more and more ways to extend life, we have also provided water and nutrients to a forest of unrealistic expectations that have real-time consequences for those frail bodies that have been entrusted to us.
A Slow, But Enormous Change
This transition to doing more and more did not just happen on a specific day in some month of some year. Our end-of-life psyche has slowly devolved and shifted and a few generations have passed since the onset of the Industrial Revolution of medicine.
Now we are trapped. We have accumulated so many options, drugs, stents, tubes, FDA-approved snake oils and procedures that there is no way we can throw a blanket over all our elderly and come to a consensus as to what constitutes inappropriate and excessive care. We cannot separate out those things meant to simply prolong life from those meant to prolong quality life.
Nearly 50 percent of the elderly U.S. population now die in nursing homes or hospitals. When they do finally pass, they are often surrounded by teams of us doctors and nurses, medical students, respiratory therapists and countless other health care providers pounding on their chests, breaking their ribs, burrowing large IV lines into burned-out veins and plunging tubes into swollen and bleeding airways.
‘What in the Hell Were You Thinking?’
We never say much as we frantically try to save the life we know we can’t save or perhaps silently hope we don’t save. When it’s finally over and the last heart beat blips across the screen and we survey the clutter of bloody gloves, wrappers, masks and needles that now litter the room, you may catch a glimpse as we bow our heads in shame, fearful perhaps that someday we may have to stand in front of God as he looks down upon us and says, “What in the hell were you thinking?”
When it comes time for us to be called home, those of us in the know will pray that when we gaze down upon our last breath we will be grateful that our own doctors and families chose to do what they should instead of what they could, and with that we will close our eyes to familiar sounds in a familiar room, a fleeting smile and a final soft squeeze of a familiar hand.
Complete Article ↪HERE↩!
By Sarah Simons
[S]hould doctors do everything they can to preserve life, or should some medical techniques, such as cardio-pulmonary resuscitation (CPR), be a matter of patient choice? Doctor Sarah Simons wades into the debate and argues that ‘do not resuscitate’ decisions are all about patients’ human rights.
Of all our human rights, the right to life is the one most often held up as the flagship, fundamental right: after all, without life, how can one learn, love, communicate, play or have a family?
The right to life is closely linked to the right to health. Under the International Covenant on Economic, Social and Cultural Rights, which the UK has signed and ratified, states are required to “recognise the right of everyone to the enjoyment of the highest attainable standard of physical and mental health”.
Protecting patients’ rights to life and health involves providing necessary life-saving treatment (known as resuscitation) if their life is threatened by serious illness or injury. It also involves enabling patients to live as well as possible for as long as possible: for example, by treating preventable diseases and encouraging people to adopt a healthy lifestyle. However, although many aspects of medicine and health are unpredictable, death is the one certainty for all of us.
Is There a Right to a Good Death?
In recent years, there has been much debate surrounding how healthcare practitioners should approach end-of-life issues with patients. A ‘good, natural death’ is increasingly recognised as a part of someone’s human right to life.
When healthcare professionals acknowledge that someone is approaching the final stages of their life, and no longer responding to life-saving treatment, treatment is not withdrawn, but instead, the goal is changed to treatment focussed on preserving the patient’s quality of life and managing their symptoms in accordance with their wishes. It’s important to draw a distinction between this and the ethical debate on euthanasia, which is altogether different from end-of-life care and natural death.
A ‘good, natural death’ is increasingly recognised as a part of someone’s human right to life.
This change of focus often includes completing a ‘Do Not Resuscitate’ (DNR) order, instructing healthcare teams not to carry out cardiopulmonary resuscitation (CPR) when the patients’ heart and lungs cease to work. This decision is usually made on the grounds of pre-existing medical conditions and poor physiological reserve and frailty, which mean that CPR will not be successful. A DNR should always take into account the patient’s informed opinion on the matter, or at least their next of kin’s.
A DNR decision only refers to CPR. The patient can still receive treatment for related issues, such as antibiotics for an infection, and all other life-preserving or life-saving treatments can be given until the patient’s heart and lungs stop working. A DNR decision never means that life-saving treatment is not given – the purpose of a DNR is to allow the patient to pass away naturally and peacefully, with dignity and without traumatic medical intervention.
What Exactly is CPR?
Understanding the reality of CPR is vital to understanding why it is a human rights issue. CPR is used when someone has a cardiac arrest, which means they have suddenly stopped breathing and their heart has stopped beating.
CPR specifically refers to the chest compressions, electric shocks and artificial breathing technique used to stimulate and replicate the beating of the heart to pump blood around the body and the breaths taken to inflate the lungs with oxygen. This is effective when a sudden cardiac arrest occurs and someone’s organs stop unexpectedly, but the underlying mechanism of a cardiac arrest is very different from when the heart stops beating as part of the body’s natural decline at the end of life.
CPR is traumatic, undignified and usually unsuccessful in patients of all ages.
Sadly, despite Hollywood’s optimistic depictions of resuscitation, the reality is that CPR is often traumatic, undignified and usually unsuccessful in patients of all ages. CPR will not reverse years of gradually shrinking muscle mass, rejuvenate brains worn down by the steady decline of dementia, remove cancerous tumours or clear obstructed lungs weathered by years of COPD, which are often the underlying causes when someone’s heart and lungs have stopped.
CPR will cause bruising, vomiting, bleeding and broken ribs. CPR will render someone’s dying moments traumatic and undignified, and it will leave their friends and families with lasting memories of a failed, brutal resuscitation rather than a mental image of their loved one peacefully slipping away pain-free and asleep.
What Do Experts Have to Say About This?
Guidance published by the General Medical Council (GMC) in 2016 emphasised the importance of recognising patients’ human rights in relation to decisions about CPR and end-of-life care. The guidance recognised that “provisions particularly relevant to decisions about attempting CPR include the right to life (Article 2) [and] the right to be free from inhuman or degrading treatment (Article 3)”.
Article 3 of the Human Rights Convention specifically refers to the right to protection from inhuman or degrading treatment, and understanding the brutal, traumatic reality of CPR is a crucial consideration when thinking about DNR decisions. The GMC goes on to reference “the right to respect for privacy and family life (Article 8), the right to freedom of expression, which includes the right to hold opinions and to receive information (Article 10) and the right to be free from discrimination in respect of these rights (Article 14).”
The GMC guidance also highlights that the Human Rights Act, (which incorporates the Human Rights Convention into UK law), “aims to promote human dignity and transparent decision-making”, which should also be key concerns for doctors making decisions across all aspects of medicine.
Making the Right Choice For The Patient
Having open, frank discussions about CPR, and end-of-life decisions in general, enables healthcare professionals and patients to make informed decisions together. Doing so empowers patients to ask questions and insist that their rights are respected. It gives patients time to talk to their loved ones about what’s important to them, including any religious considerations, before their health deteriorates to a point where these conversations may not be possible.
Having open, frank discussions about CPR … enables healthcare professionals and patients to make informed decisions together.
Avoiding these conversations, while perhaps understandable given that no-one likes to think of their loved ones dying, means that important questions may not get asked and the patient’s wishes may go unheard. Making decisions on CPR and other practical matters is important, but so is acknowledging that someone wants to spend their last days eating mint chocolate chip ice cream at home listening to a specific Eva Cassidy album whilst surrounded by their pets and children.
As the NHS turns 70 later this year, and continues to navigate the challenges of an ageing population, conversations about end-of-life care are more important than ever before. Grief and bereavement are difficult, emotionally charged topics of conversation, but death is a normal human process. Taking the opportunity to talk about what we want at the end of our lives empowers us to make informed decisions and ultimately help all of us to die well one day.
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[L]ocal medical schools are in the process of a curricula revamp that will train students to focus more on end-of-life care, making Massachusetts the first in the nation to reach a statewide commitment to quality of life.
“Massachusetts is really leading the way on this. It led the way on universal health care, on gay marriage, and it’s leading the way on this, too,” said Dr. Atul Gawande, a surgeon at Brigham and Women’s Hospital and author of the book “Being Mortal.” “I’ve learned the question is not do you fight or do you give up. The question really is, what are we fighting for? What’s the quality of life we can fight for?”
The Massachusetts Coalition for Serious Illness Care has orchestrated the effort among four local institutions: Harvard Medical School, Boston University School of Medicine, Tufts University School of Medicine and University of Massachusetts Medical School.
Gawande, co-founder of the coalition, said Massachusetts has the opportunity to create a national model for medical schools across the country.
It’s an important shift, he said, from the fix-it mentality that many doctors are taught to possess. He said the extent of his end-of-life training amounted to an hour of discussion in the first two years of medical school.
“You go in focusing on wanting to be a hero and fix things,” Gawande said. “Teaching people in med school what it means to be an effective clinician for giving people cutting-edge care for quality of life — as opposed to quantity of life — is a neglected skill.”
The medical schools are taking inventory of what skills they’re already teaching and will add various training methods including role play patient actors. UMass Medical School’s simulation lab is already starting to be used for skills that extend beyond sewing and suturing, said Dr. Jennifer Reidy, the school’s chief of palliative care.
Medical students will be required to have conversations with people about breaking difficult news, prognosis and end-of-life planning.
“We’re using it to teach complex communication procedures,” Reidy said. “We want to ensure our newest clinicians are well-situated to practice these skills.”
The changes will be implemented in full by the beginning of next academic year, Reidy said.
Tiffany Chen, a third-year medical student at UMass, said the topic of death is still taboo even in the medical field.
“It’s really hard to talk about death, and it’s hard to conceptualize,” Chen said. “But death is not a failure and there’s always something you can do for a patient. If we can infiltrate the medical field with that mindset, we could do a lot of good.”
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