Between life and death:

What a neurologist learned when his brother-in-law fell into a coma

In neurology, there’s a “middle ground” between life and death that providers and patients’ family members alike struggle to navigate—but a new subspecialty could help improve communication around patients’ care, Joseph Stern, a neurologist who’s found himself on both the provider and family side of these difficult brain injuries, writes for the New York Times‘ “Well.”

A family member’s aneurysm leads to difficult decisions

Two years ago, Stern’s brother-in-law, Pat, collapsed with a brain hemorrhage from a ruptured cerebral aneurysm and was taken to UCLA Medical Center. Stern, as Pat’s legally designated health care power of attorney, gave permission for Pat to undergo a “surgical clipping of his ruptured aneurysm” and flew to California to oversee the rest of Pat’s care and communicate those care decisions with Pat’s family.

“Technically, surgery went well,” Stern writes. “But Pat never regained consciousness.” While Pat wasn’t brain-dead, “he remained deeply comatose,” Stern writes.

This, Stern writes, left Pat in a complicated, but all too common, “middle ground” in medicine: he’d experienced a “neurologically devastating injury without brain death.”

In these cases, Stern writes, care-related “decisions can be more difficult” for both family members and providers to know when to stop life-sustaining care. While brain death “is stark and final,” Stern writes that patients with severe neurological injuries who are not brain dead can survive on life-sustaining supports though in many cases they may never wake again.

Stern and Pat’s neurosurgeon, Gregory Lekovic, decided to give Pat a week to improve, and if he didn’t, Lekovic advised the family not pursue more aggressive measures, such as a tracheostomy and G-tube placement. “Lekovic and I worried it would be difficult to back off after those procedures had occurred,” Stern writes.

Pat didn’t neurologically improve after a week, and it was likely that he “would never regain consciousness,” Stern writes.

Stern and Pat’s family had decided to stop treatment, but on the morning they planned to do so one of the neuro-ICU specialists gave them reason to pause. “[O]ne of the neuro-ICU specialists presented a scenario in which Pat might wake up, become able to walk with assistance, and participate with his family,” Stern writes. However, “When pressed, the doctor admitted he was giving us the best possible outcome, rather than the most likely outcome,” Stern writes.

Stern and the family consulted again with Pat’s neurosurgeon, Lekovic, who said if it were his loved one, he’d “make the decision to end treatment,” Stern writes. According to Stern, Lekovic “seemed genuinely sad” saying this.

The importance of empathy and connection

“Doctors often think it is most important to be precise and not make mistakes; to predict the future with medical certainty,” Stern writes. “In my experience, connection and empathy are far more important than certainty. Patients and families want to know that you care about them and that you appreciate their pain in difficult circumstances.”

To help guide families and caregivers through this complicated medical condition, Stern notes that a new field, called neuropalliative care, has emerged. In neuropalliative care, providers “focus ‘on outcomes important to patients and families’ … ‘to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body.'”

Health care providers shouldn’t “focus on the short-term or allow care to be driven by procedures, losing sight of outcome and quality of life,” Stern writes. “We need to approach our patients and their families with open hearts, acknowledging their suffering and the uncertainty we all experience.”

In the case of Pat, Stern explains that his family, particularly Pat’s sons, “appreciated the truth when I explained their father’s prognosis.” Of course, the sons were “devastated at the prospect of losing him,” Stern writes, but “honesty and inclusion in decision-making were important in helping them move forward with their lives”

Complete Article HERE!

Do doctors grieve differently?

After Dr Alison Edwards’ soulmate died, grief took hold. Who else, she wondered, knew what this was like?

Dr Alison Edwards set up the website, Doc Grief, following the death of her partner Mick 15 years ago.

By Doug Hendrie

‘We really need to talk more about death … it is an inevitable part of life, and yet we shroud it in euphemism, hushed secrecy, and denial. We often grieve alone with little sense of shared understanding as we sanitise our emotions and somehow carry on.’

That is how South Australian GP Dr Alison Edwards began a talk she gave to her local palliative care team. And it is why she set up a website, Doc Grief, dedicated to supporting doctors who have lost loved ones.

That is what she wished existed when she lost her ‘soulmate’ Mick to a sudden cardiac arrest 15 years ago.

Dr Edwards’ own path of grief has shown her that doctors often grieve differently – and that the professional distance necessary to deal with death at work simply does not cope with personal grief.

‘I felt the need to know others had walked a similar path and survived, and to maybe find some tips about how best to achieve this,’ she told newsGP.

‘I wanted to read a story that was a close match to mine, but found very little in print about doctors grieving. So some years later I felt drawn to create such a site for others.’

Writing on her site, Dr Edwards tells the story of her loss:

Mick was the local footy legend, the cheeky butcher with a sparkle in his eyes. After 38 years of thinking life for me was destined not to be one of a long-term couple, it was really nice to have someone to love and be loved by and even see myself growing old with.

Mick had spent the afternoon out with the kids and had had a couple of beers down the pub while I was in at work. He was in one of his favourite positions – lying on the lounge channel-surfing. And then Mick had a cardiac arrest and died. No warning. No clues. Just chatting with me one minute about the perfume the kids had given me for Christmas and next minute making funny breathing noises as if he didn’t like the perfume.

Mick died, and the world as I knew it crashed down around me.

Mick was just 37.

In the immediate aftermath, Dr Edwards’ small community – Port Broughton on SA’s Yorke Peninsula – reached out. That, she found, was supportive and challenging.

‘It meant having to share my grief with the town. There was no opportunity to return to work and not have everyone wanting to express condolences,’ she said. ‘I couldn’t turn around without finding more scones, lasagnes and soup.

‘People want to do something physical, which is beautiful, but you also can’t be anonymous. In an urban practice, you could sneak back and your patients would necessarily know. Here, everyone knew.’

Dr Edwards took several months off following Mick’s death. When she returned to work, she printed little cards for her patients to read ahead of consultations.

The cards stated that Dr Edwards was doing okay and asked patients to treat it as a normal professional consultation.

‘No one could stick to it. I gave up,’ she explained. ‘Patients felt rude not to express their condolences.

‘The first time you see everyone, they feel the need to go through it. It made things a little bit harder.’

Since she set up the site, many GPs have told Dr Edwards that it has been helpful. Some have written to her seeking support. Others have contributed their own stories of grieving.

‘Reaching out to those with lived experience can be very supportive,’ she said.

‘I’ve had people write saying thank you so much for setting this up. Just knowing that someone else had lived the experience while having a broader understanding of the health system [is helpful].

‘Doctors do get the idea that random stuff happens. In the community, there’s often the expectation that we can fix everything, but doctors understand that things are unpredictable.

‘People do randomly have cardiac arrests and die.’

Dr Edwards believes doctors grieve differently, due to their familiarity with death and learned ability to maintain professional distance.

‘Knowing death so intimately may falsely lead us to think we are acquainted with grief, but when it comes to losing a loved one all bets are off,’ she wrote in a KevinMD article.

Dr Edwards believes that the stereotypical doctor personality traits – high achievers able to hide their emotions and focused on control – can pose particular challenges, as grief and loss are entirely uncontrollable.

‘Doctors spend most of their time observing … [but] unless we have loved in a dispassionate, dissociated way, we do not give our grief a fair chance if we do not live it,’ she wrote.

Dr Edwards’ grief was ‘very raw’ for the first few years. Over time, it gradually changed.

‘I went from feeling it with every breath and as if it was sitting right in front of me, to a place of living with it rather than living for it,’ she told newsGP.

But she still misses the shared life that could have been, writing:

I still love him and what he gave me. And I miss the future we didn’t get to share … I think I have a more profound sense of living life to my fullest capacity and valuing what I do have.

I have coped by taking one day at a time, allowing time to soften the impact and create new memories.’

There are no shortcuts and no way of bypassing the process of healing after a broken heart.

There are no right ways of grieving. Whatever you find works for you is probably the best for you. This is unlikely to be booze, drugs or running away but you may need to try this for yourself for a while before you believe it. There is no standard timeline. You do not get over it, you do not move on as if it could be left behind. But you do learn to live with it rather than be consumed by it.

Increasingly, Dr Edwards finds people grieving in her long-time community are seeking her out.

‘It has changed how I practise,’ she said.’ ‘You’re taught not to bring too much of yourself into the consultation, to keep your distance, be professional, as it’s not about you.

‘In a little community, it’s almost impossible to do that. Patients want that sense of connection – especially when they already know your story and you can’t duck away from it.’

Dr Edwards will share parts of her grief with patients to help normalise their own experiences.

‘You almost need to do this in smaller communities, but it might not be appropriate in an urban setting,’ she said. ‘There is power in a shared understanding.

‘Often people want to talk because they know I have that lived experience. Not to acknowledge that would be counterproductive.

‘We’re humans, we like to know we’re not alone. We can be reassuring, to let patients they’re not going mad – that this is a normal response.

‘It can be powerful to hear that from someone who lived it.’

Complete Article HERE!

A 97-Year-Old Philosopher Ponders Life and Death: ‘What Is the Point?’

In his 1996 book about death, Herbert Fingarette argued that fearing one’s own demise was irrational. When you die, he wrote, “there is nothing.” Why should we fear the absence of being when we won’t be there ourselves to suffer it?

Twenty years later, facing his own mortality, the philosopher realized that he’d been wrong. Death began to frighten him, and he couldn’t think himself out of it. Fingarette, who for 40 years taught philosophy at the University of California at Santa Barbara, had also written extensively on self-deception. Now, at 97, he wondered whether he’d been deceiving himself about the meaning of life and death.

“It haunts me, the idea of dying soon, whether there’s a good reason or not,” he says in Andrew Hasse’s short documentary Being 97. “I walk around often and ask myself, ‘What is the point of it all?’ There must be something I’m missing. I wish I knew.”

Hasse, Fingarette’s grandson, turned the camera on the philosopher in the last months of his life. The two were very close—when Hasse was a child, Fingarette would invent stories and record them on tape to send to his grandson, who lived 300 miles away, so that he could listen to them before bed. “My grandfather was one of the most thoughtful men I’ve ever met,” Hasse told me.

Being 97 is a poignant film that explores the interiority of senescence and the struggle of accepting the inevitable. Hasse quietly observes the things that have come to define his grandfather’s existence: the stillness of time, the loss of ability, and the need to come to terms with asking for help. “It’s very difficult for people who have not reached a state of old age to understand the psychology of it, what is going on in a person,” Fingarette says.

In one scene, Fingarette listens to a string quartet that was once meaningful to his late wife. He hasn’t heard the piece since her death seven years earlier—“her absence is a presence,” he says in the film—and becomes overwhelmed with grief.

Hasse made the artistic choice to omit his voice from the film, so while he was filming the scene, he had to stifle the urge to comfort his grandfather. “It’s very difficult to watch anyone in that kind of pain and not be able to console them, especially someone you love so dearly,” Hasse said. “I found myself sitting just a few feet away from him, unable to reach out because there was a camera between us. All I wanted to do was put a hand on his shoulder, embrace him, be with him in his pain.” After what felt to Hasse like an eternity, the filmmaker handed his grandfather a tissue to wipe away his tears. The scene ends just before this happens.

Fingarette died in late 2018. Just weeks earlier, Hasse had shown him the final cut of the documentary. “I think it helped give him perspective on what he was going through,” he said. “He loved talking about what a mysterious process it had been to film all these little moments of his life and then weave them together into a work that expressed something essential about him.”

The day before he died, Fingarette uttered his final words. After spending many hours in silence with his eyes closed, Hasse said, his grandfather suddenly looked up and said, “Well, that’s clear enough!” A few hours later he said, “Why don’t we see if we can go up and check it out?”

“Of course, these cryptic messages are up to interpretation,” Hasse said, “but I’d like to believe that he might have seen at least a glimpse of something beyond death.”

In the film, Fingarette admits that there “isn’t any good answer” to the “foolish question” of understanding mortality. “The answer might be … the silent answer.”

A blood test that predicts the risk of dying

by Dr. Brian Goldman

As Canada’s population ages, there is increasing demand on our health-care system. A simple blood test may help doctors predict who is at risk of imminent death, according to a study published Monday in the Canadian Medical Association Journal.

Dr. Stig Bojesen and colleagues from the University of Copenhagen studied 108,135 Danish people ages 20 to 100 years who were part of the Copenhagen General Population Study. During the study period, a total of 10,372 people died. The researchers combed through the health records of those who died in search of abnormal blood test results.

They found that the people who died during the study period had lower levels of a white blood cell called a lymphocyte. The researchers crunched the numbers. Compared with those with a normal lymphocyte count, those patients with a low lymphocyte count were 1.6 times more likely to die during the study period.

There are several possible ways in which a low lymphocyte count might be connected to an early demise. 

One clue is that the current study found that a low lymphocyte count was associated with an increased risk of death from cancer, cardiovascular disease, respiratory disease, infections and other causes. These are chronic diseases that are common in older patients.

Researchers say they hope the blood test findings help doctors identify patients at risk of death within two years.

Lymphocytes are part of the immune system and the immune system is necessary to help patients fight off chronic diseases. The researchers speculated that a weak immune system might be one of the reasons why diseases like cancer and respiratory disease are more common the older we get.

Another theory is that a low lymphocyte count might indicate that the patient is frail. We know from other research that frailty can lead to illness and death.

Other tests to predict risk of imminent death

The lymphocyte count is not the only blood test that can help predict the risk of dying.

A number of studies have looked at another simple blood test called C reactive protein or CRP. Elevated levels of CRP are associated with increased risk of imminent death. A recent study found that patients in Japan who come to the emergency department with a heart attack and who have a high CRP level are more likely to die during the ensuing hospital stay.

A 2019 study in the journal Nature Communications identified 14 new biomarkers that can be measured in the bloodstream that could predict the risk of dying within five or 10 years. The study found these tests would likely be more accurate than the conventional risk factors (for example, smoking and heart disease) that doctors use currently. 

The researchers say they hope the findings help doctors identify patients at risk of death within two years. Such patients might be followed more closely for signs of life-threatening illnesses and perhaps treated more aggressively. Patients could then be re-tested to see if the lymphocyte count, CRP and other blood tests returned to normal levels as the imminent risk of death is reduced.

Down the road, researchers say they would like to use those abnormal tests and biomarkers to design targeted treatments that might stave off death.

It’s worth keeping in mind that studies like this one confirm what doctors already know. Studies show that doctors are good at identifying patients whose imminent death would not surprise them.

I think patients and their families might be very surprised that their doctors believe them at imminent risk of dying. I believe doctors need to share that information with patients and families to encourage them to live healthier or at very least prepare them for what lies ahead.

Complete Article HERE!

Cannabis in Palliative Care

Dying with dignity is a human right, and cannabis could help

By Mary Biles

End-of-life care is one of the less frequently discussed uses of medical cannabis. After all, most of us who turn to cannabis, want to continue living, right? And yet, thanks to the ability of cannabis to ameliorate the heavy symptom burden experienced by patients with minimal side effects, palliative care is perhaps the area of medicine that would most benefit from its clinical use.

Dying is a journey all of us will inevitably take, however how to ‘die well’ is something we tend not to consider. Dignity with dying is only possible, I believe, when there is a certain amount of consciousness and acceptance of the process. Something that a skinful of morphine doesn’t allow. But cannabis does, and I experienced this for the first time with a friend’s mother.

As Jose neared the end of her life after battling pancreatic cancer, morphine failed to control her pain, leaving her confused and unable to connect with loved ones. Thanks to an open-minded doctor who recommended cannabis oil, the last few weeks of her life became the gift her family longed for. The pain no longer troubled her, the anxiety lessened, sleep returned, as did her appetite. Not only that, Jose remained fully lucid until moments before she died.

This changed me forever and it’s why I’m sitting here today writing about cannabis.

Holistic medicine

Sadly, when my mother became terminally ill with advanced cancer, this option was not available in the UK. Sure, I had a few offers from my cannabis contacts. But for an 82-year-old Irish ex-nurse, trusting a funky tasting oil (that I couldn’t say for sure how much to take) over the pharmaceutical meds prescribed in precise dosages was never going to happen.

Instead, I found myself administering a list of medications that just kept growing and growing as the disease progressed. This included morphine for the pain (which incidentally my mum couldn’t tolerate), antiemetics for nausea, laxatives for the constipation caused by both the cancer and the pain medication, as well as Lorazepam for the middle-of-the-night agitation.

The frustration was overwhelming. I knew that instead of the sledgehammer approach to her symptom control, a far more holistic, person-centred alternative existed that could not only ease her pain, take the edge off her anxiety and agitation, stimulate her appetite and help with the nausea, but also allow her to be present for the time that remained.

What is Palliative Care?

According to the World Health Organization, palliative care is “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

In other words, palliative care encompasses end-of-life care, but a patient receiving palliative care is not necessarily approaching death.

However, when a patient enters the end-of-life stage in a hospice setting, the emphasis on quality of life means rules often get bent in a bid to fulfil a dying patient’s wishes and beliefs. Dogs and family pets are welcome guests in a patient’s room, and a glass of wine is not unheard of, if that’s what the patient wants. So why not allow access to medical cannabis if that will help ease the suffering of a dying patient?

In some countries and states in the US, palliative and end-of-life care is considered a qualifying condition for the prescription of medical cannabis.

Using Cannabis in Palliative Care

Since 2007, the Israeli Ministry of Health has approved medical cannabis for palliative care in patients with cancer. This led to a prospective study analysing the safety and efficacy of cannabis in 2970 patients and the responses were overwhelmingly positive.

Ninety-six percent of patients who responded in the 6 month follow-up reported an improvement in their condition, 3.7% reported no change and 0.3% reported deterioration in their medical condition. Furthermore, while only 18.7% of patients described themselves as having good quality of life prior to cannabis treatment, 69.5% did six months later. Tellingly, just over a third of patients stopped using opioid pain medication.

While observational studies such as these suggest cannabis can improve symptoms commonly found in advanced cancer, as well as improving quality of life, in practice physicians often feel insufficiently informed to prescribe cannabis to their patients.

A 2018 survey found that of the 237 US oncologists interviewed, 80% conducted discussions with their patients about cannabis, while only 30% actually felt they had enough information.

 

However, an encouraging 67% viewed cannabis as a helpful additional way to manage pain, and 65% said that it was equally or more effective than the standard treatments for the rapid weight loss often found in advanced cancer. And yet, only 45% of them actually prescribed cannabis to their patients.

These discrepancies mean that even in countries where cannabis can legally be prescribed for palliative care, many physicians prefer to stick to the usual methods of symptom control.

A Physician’s View

Claude Cyr, MD, a Canadian family physician and author of “Cannabis in palliative care: current challenges and practical recommendations,” believes palliative care is uniquely suited to cannabis.

 

“If we’re going to integrate cannabis products in medicine,” he told Project CBD, “palliative care is the best port of entry because of the fact that doctors have more time, and patients also have the time to deal with possible issues of the medication.”

However, in order for cannabis to fulfil its potential in palliative care, Dr. Cyr believes a shift in how physicians view symptom control is needed.

“What seems to be coming through with the research for symptom control,” says Cyr, “is that cannabis is mildly effective for pain, mildly effective for nausea, mildly effective for insomnia and anxiety. It doesn’t treat any one of these conditions dramatically better than the other medications that we have. So, many physicians are like ‘why would we take a medication that is mildly effective when I can take a much more incisive approach with specific symptoms.’ Instead of saying ‘Do you have a bit of pain, a bit of anxiety, a bit of insomnia, a lack of appetite and a bit of nausea? So why don’t we start with something that’s mildly effective for all that and then we’ll be able to work on more specific symptoms in the long run’.”

Cyr is also critical of fellow physicians’ tendencies to rely on clinical evidence while dismissing the validity of their patients’ positive experiences.

“Palliative care is a specific situation where we can actually put into question the core philosophy of medicine which is the evidence based paradigm. I think physicians need to stop obsessing over the evidence when their patients are dying and clearly telling them, ‘I’m really enjoying this, I’m getting huge benefits from this, I’m sleeping better, I’m eating better.’ But the physicians are nodding their heads and saying, ‘I hear you, but I can’t accept this because I’m still lacking evidence.’

“But I think there is enough data out there to convince physicians that it’s safe for palliative care patients, and it’s predictable.” 

Psychoactivity in palliative care

Cyr urges doctors to find peace with the idea that cannabis is psychoactive, which he believes could actually help patients process the existential anxiety often experienced at the end of their lives.

“When you look at the studies of psychedelics in depression and existential anxiety in cancer patients, some of these results have been dramatic,” says Cyr. “Although cannabis isn’t a true psychedelic, there are some similar experiences that patients tell us about.

At smaller doses patients experience a psycholytic effect, a lowering of the defenses allowing people to explore other aspects of their psyche, and that’s when they start making connections between different aspects of their reality.”

THC’s ability to reduce activation of the default mode network, the area of the brain involved in cognitive processing and where our ego or sense of self is thought to reside, could also potentially bring a sense of peace to dying patients.

Cyr explains: “Existential anxiety is rooted in the loss of the self, but when you can dissolve the ego temporarily and you realize it’s not all about me, that can be liberating.”

For the last fifty years, activists have been campaigning for the right to use cannabis to treat their health conditions in order to be well. This must also be extended to using cannabis to maintain quality of life in life-threatening illnesses, and when this no longer becomes possible, to die well and with dignity.

In memory of Jose and Agnes.

Complete Article HERE!

There is beauty and joy at the end of life, too

By Sarah Gray

What people don’t understand is the beauty and joy to be found at the end of life. When I tell people I work at a hospice, they often say “that must be so hard.” But my favourite thing is hearing people’s stories, their experiences, their successes, their failures – the things that life has taught them. I love helping them share these stories with their family members. It helps the family members keep their loved one alive in their memories after he or she dies.

I had a husband of a resident come in six months after she had died to say that he received a Christmas card from her, written to him while in hospice. He was tearful, but so incredibly grateful for this gift. He said the card helped keep her alive for one last Christmas.

Hospice workers encourage conversations about things that want to be said and heard. We create time for families to connect, laugh and cry together. Mostly, we help create a legacy of the resident that will remain with their family.

We have helped someone write letters to each of her children. We have sung favourite songs, played favourite games. We have celebrated birthdays, births, marriages, vow renewals. We have rolled people in their beds out onto the patio to sit in the sun. Often, this is their first time outside the four walls of a hospital or bedroom in months. How amazing it is to have such a thoughtfully designed building that can make this possible – feeling the warmth of the sun directly on their skin, hearing the birds chirping from the nearby feeder and breathing in the fresh air. I see how it provides the resident and their family with a sense of normalcy. This is where the best conversations happen. Families can forget, for a moment, about what is to come, and just enjoy the present.

Hospice is a place that collects nurses and personal support workers such as me. The emotionally challenging work we do weans out the people who think it’s just a job. You do not just show up for a shift, put in the time, and clock in and out. You are responsible for providing this human being, who has lived a whole life, with the care and dignity they deserve as they finish it. We help ensure that all loose ends are tied. Sometimes, these things are big, such as arranging a visit from a miniature pony that one of our residents used to show. Sometimes they are small, such as staff sitting at the bedside of a resident who doesn’t have any family, holding their hand, so they don’t die alone.

I have spent time working in hospitals, in long-term care and in the community as I searched for a place where the work that I did matched my beliefs of patient-centred care and individuality. After my first day at the hospice, I knew I had finally found my match. The loss of the residents we care for like family does not take a big piece of us with them but, rather, fills us with purpose and joy. The work we do gives us so much back that the word “rewarding” doesn’t even scrape the surface.

I began working at the hospice in May, 2017. As much as I love the work and what we accomplish, I could never have imagined needing it myself. Shortly after I started, my father was diagnosed with cancer. Soon we were faced with the decision I have seen so many other families struggle with: Do we settle for adequate care in the comfort of our home or do we move to the hospice where we will receive excellent care but in an unfamiliar location? The decision was easy for me, but not so much for my mom. She was afraid that moving him to hospice meant she was giving up her ability to care for her husband. But my mom was relieved to discover that she could still conduct much of the care, even in our facility. She did not have to sacrifice one for the other. With the 24/7 nursing and physician support, Dad – after eight months of suffering from his illness – finally had some peace.

During this time of comfort, he was able to give back to us something we will carry with us forever. He called us all in, on his last good day, told us all how much he loved us and reassured us that he never suffered. He was able to leave me with a recording, telling me what our relationship meant to him and that he would be with me through all of the big life events that he would now miss.

The hospice isn’t a place where people come to die. It is where they come to live – to live well for the little time they have left. It is a place of celebration, connection, comfort and support. It is a place of safety for the dying and the grieving. Experiencing such care with my father has only fuelled my passion to ensure that as many people as possible can have a similar experience.

Complete Article HERE!

My 92-Year-Old Father Didn’t Need More Medical Care

Ordering up more tests and surgeries for dying patients is easy. Getting patients the end-of-life care they deserve takes much more effort.

By

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 the physician to prescribe my father two antibiotics for his supposed pneumonia even though he had none of the symptoms—a fever, ugly-looking phlegm, shortness of breath. Indeed, he was comfortably breathing room air with 100 percent oxygen saturation, which people with pneumonia typically can’t do. But it was impossible for the physician to order an in-home aide to help my father shower, get to and from the bathroom, and navigate the stairs to the living room and kitchen.

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!