Category: Healing and Helping Professionals

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Nurse helping patients prepare for a ‘beautiful death’ after her own tragic loss


Alex Blake, who helped set up the Gold Line team following the death of her husband Iain

By Chris Burn

[D]ying at home is a sadly-unfulfilled wish for many terminally-ill patients – but a team of nurses working in North Yorkshire are starting to change that. Chris Burn reports.

“I’m passionate about end-of-life care. My husband died at home ten years ago and he had the most beautiful death – it is possible. Death is really important, it is the last activity of living. The way someone dies is left with those that are living; it is the families that will carry that with them.”

Nurse Alex Blake has played an important role in a pioneering team of nurses working in North Yorkshire to help terminally-ill people and their loved ones prepare for death in their final months, weeks, days, hours and minutes. She says she now hopes the Gold Line service which has been operating from Airedale Hospital for the past three years can be introduced across the country.

Across England, only one in five people die at home but around twice this number who use the service are able to pass away in their own house.

The phone line, which is manned around the clock by senior nurses, provides advice and guidance to people in the last year of their life and their loved ones to help with physical problems, as well as the inevitable emotional toll that comes with the prospect of impending death. The medical advice the team are able to provide also helps to take the pressure off local NHS services, with one-third of calls solved without additional referrals to doctors or district nurses.

However, the service is currently only available in Airedale, Wharfedale, Craven and Bradford. While similar support is offered in Scarborough and Ryedale for carers of people undergoing community-based palliative care, other areas of the county do not have such a system in place.

Alex Blake with her late husband Iain

A recent North Yorkshire County Council review of end-of-life care suggested learning from the way Gold Line operates should be an area of development for the rest of the region. Alex says: “I believe everyone should be able to choose where and how they die and nurses at Gold Line are pivotal in making that happen. The service needs to be rolled out nationally so that everyone has equal choice at end of life.

“Even in East Lancashire, which is 20 minutes down the road, we have patients who come here but can’t use Gold Line because they aren’t in the right postcodes.”

Alex moved from a role in critical care to be part of the Gold Line team when it was founded three years ago. She has recently moved to a slightly different role within the telemedicine service at the Airedale Foundation NHS Trust focusing on end-of-life support in care homes but remains a passionate supporter of the work of Gold Line.

She says she has always had an interest in end-of-life care but tragically found out personally how the system operates when her husband Iain, a doctor who suffered with diabetes, died from renal failure at the age of just 49.

“I think we constitute success as helping people to die comfortably where they want and in the way they want. It was a major comfort to me and my children that Iain died a beautiful death at home, comfortable and with everyone around him.”

She says that experience has given her a greater ability to connect with those going through the experience of terminal illness affecting a loved one but adds that all those who work on the Gold Line team instinctively know the importance of empathy.

“Without a shadow of a doubt, I have got huge empathy and understanding of people’s fears and anxieties about death and the grief that come as someone approaches the end of their life. You have to have the right amount of empathy to do this job because it is not easy to have the conversations we are having.

“You do get more calls during the night when people are frightened, can’t sleep and are more worried. You have very emotional conversations with people who can be crying or angry. We speak to the patients wherever we possibly can but it tends to be the relatives we are supporting. They are the people who are helping that person to die. We might take anything up to 20 calls per day. You do receive very distressing calls when people have just died and their relatives are distraught.

“A huge part of the job is explaining what is actually happening; if someone’s chest is rattly and they are breathing differently you have to explain this is the process. There is a huge stigma about death in western culture. There are a lot of myths like people needing fluids when more fluids actually make things worse.

“It is emotionally draining at times. We get a lot of young people from in their 20s to in their 50s. It is particularly emotional when it is someone who is younger and the pain for the mother and father when a 20-year-old is dying. It is not easy.”

She says while the job can be tough, it is also hugely rewarding. Those who work on the team are sent “stacks” of thank you cards from bereaved families. “It is so touching and there is such an enormous amount of job satisfaction. It is not easy but it is a privilege helping someone to die well. Sometimes when we have had a difficult day, I say to my colleagues read some of the thank you letters – it just motivates you.”

Helen Livingstone, palliative care consultant at the Airedale NHS Foundation Trust, says when the service was started local GPs were encouraged to talk to people whose health issues meant it was likely they were approaching the final year of their life and explain this support system was available.

“They are very sensitive conversations but the value of having them is great. Their care is much better and they are much more likely to die in the place they choose to die.”

She says the service is particularly aimed at those who are unlikely to need specialist care such as hospices but still need support in the last months of their lives. Helen says Gold Line is a “really key part” of the local services involving GPs and district nurses which allow a far greater proportion of patients than the national average to die at home.

Stephen Lock, of Ben Rydding, near Ilkley, says the Gold Line service helped his wife Bea, who died from cancer, fulfil her final wishes to die at home. He has participated in a moving video to promote the work of Gold Line in which he explained how the team had helped make the best of a devastating situation.

“Whenever I rang day or night, they knew exactly who we were, knew all about Bea and didn’t seem to need to look it up on any kind of database. The night before Bea died, I could tell things were very, very different and I rang them and just said I have never seen anybody die, can you tell me what is going to happen? I didn’t want it to be a shock for me, I wanted to know what was going to come so that what she would see wouldn’t be panic.

“You do need help, you can’t do these things on your own. I remember I was holding her hand and I said to her don’t worry, we will look after our babies. That was very, very tender and very special and it could have been frightening and shocking.”

Hundreds helped by Gold Line team

Gold Line works with nearly 1,200 people in their last year of life, with nurses answering more than 500 calls a month.

Before Gold Line, if a person nearing end of life was experiencing symptoms, they would have called a doctor or an ambulance, and often would have been admitted to hospital.

Gold Line’s introduction has seen significant numbers of people avoid attending accident and emergency, having to be admitted to hospital and calling out their GP or community nursing team. In 2014/15, only 13 per cent of people registered with Gold Line died in hospital – nationally this figure was 58 per cent. Airedale NHS Foundation Trust won a £420,000 bid from the Health Foundation charity to start the scheme and is now funded by Clinical Commissioning Groups.

Complete Article HERE!

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For Some, Pre-Hospice Care Can Be A Good Alternative To Hospitals

At Gerald Chinchar’s home in San Diego, Calif., Nurse Sheri Juan (right) checks his arm for edema that might be a sign that his congestive heart failure is getting worse.

By Anna Gorman  

[G]erald Chinchar, a Navy veteran who loves TV Westerns, isn’t quite at the end of his life, but the end is probably not far away. The 77-year-old’s medications fill a dresser drawer, and congestive heart failure puts him at high risk of emergency room visits and long hospital stays. He fell twice last year, shattering his hip and femur, and now gets around his San Diego home in a wheelchair.

Above all, Chinchar hopes to avoid another long stint in the hospital. He still likes to go watch his grandchildren’s sporting events and play blackjack at the casino.

“If they told me I had six months to live, or [could instead] go to the hospital and last two years, I’d say leave me home,” he said. “That ain’t no trade for me.”

Most aging people would choose to stay home in their last years of life. But for many, it doesn’t work out: They go in and out of hospitals, getting treated for flare-ups of various chronic illnesses. It’s a massive problem that costs the health care system billions of dollars and has galvanized health providers, hospital administrators and policymakers to search for solutions.

Sharp HealthCare, the San Diego health system where Chinchar receives care, has devised a way to fulfill his wishes and reduce costs at the same time. It’s a pre-hospice program called Transitions, designed to give elderly patients the care they want at home and keep them out of the hospital.

Social workers and nurses from Sharp regularly visit patients in their homes to explain what they can expect in their final years, help them make end-of-life plans and teach them how to better manage their diseases. Physicians track their health and scrap unnecessary medications.

All the medicine Chinchar takes for his congestive heart failure and other ailments fills a kitchen drawer. “What we like to do as a palliative care program is streamline your medication list,” the nurse explained during a home visit. “They may be doing more harm than good.”

Unlike hospice care, patients in this program don’t need to have a prognosis of six months or less to live, and they can continue getting treatment that is aimed at curing their illnesses, not just treating symptoms.

Before the Transitions program started, the only option for many patients in a health crisis was to call 911 and be rushed to the emergency room. Now, they can get round-the-clock access to nurses, one phone call away.

“Transitions is for just that point where people are starting to realize they can see the end of the road,” said Dr. Dan Hoefer, a San Diego palliative care and family practice physician, and one of the creators of the program. “We are trying to help them through that process,” he said, “so it’s not filled with chaos.”

The importance of programs like Transitions is likely to grow in coming years as 10,000 baby boomers — many with multiple chronic diseases — turn 65 every day. Transitions was among the first of its kind, but several such programs, formally known as home-based palliative care, have since opened around the country. They are part of a broader push to improve people’s health and reduce spending through better coordination of care and more treatment outside hospital walls.

But a huge barrier stands in the way of pre-hospice programs: There is no clear way to pay for them. Health providers typically get paid for office visits and procedures, and hospitals still get reimbursed for patients in their beds. The services provided by home-based palliative care don’t fit that model.

In recent years, however, pressure has mounted to continue moving away from traditional payment systems. The Affordable Care Act has established new rules and pilot programs that reward the quality of care, rather than the quantity. Those changes are helping to make home-based palliative care a more viable option.

In San Diego, Sharp’s palliative care program has a strong incentive to reduce the cost of caring for its patients, who are all in Medicare managed care. The nonprofit health organization receives a fixed amount of money per member each month, so it can pocket what it doesn’t spend on hospital stays and other costly medical interventions.

‘Something that works’

Palliative care focuses on relieving patients’ stress, pain and other symptoms as their health declines, and it helps them maintain their quality of life. It’s for people with serious illnesses, such as cancer, dementia and heart failure. The idea is for patients to get palliative care and then move into hospice care, but they don’t always make that transition.

The 2014 report “Dying in America,” by the Institute of Medicine, recommended that all people with serious advanced illness have access to palliative care. Many hospitals now have palliative care programs, delivered by teams of social workers, chaplains, doctors and nurses, for patients who aren’t yet ready for hospice. But until recently, few such efforts had opened beyond the confines of hospitals.

Kaiser Permanente set out to address this gap nearly 20 years ago, creating a home-based palliative care program that it tested in California and later in Hawaii and Colorado. Two studies by Kaiser and others found that participants were far more likely to be satisfied with their care and more likely to die at home than those not in the program. (Kaiser Health News is not affiliated with Kaiser Permanente.)

One of the studies, published in 2007, found that 36 percent of people receiving palliative care at home were hospitalized in their final months, compared with 59 percent of those getting standard care. The overall cost of care for those who participated in the program was a third less than for those who didn’t.

“We thought, ‘Wow. We have something that works,'” said Susan Enguidanos, an associate professor of gerontology at the University of Southern California’s Leonard Davis School of Gerontology, who worked on both studies. “Immediately we wanted to go and change the world.”

But Enguidanos knew that Kaiser Permanente was unlike most health organizations. It was responsible for both insuring and treating its patients, so it had a clear financial motivation to improve care and control costs. Enguidanos said she talked to medical providers around the nation about this type of palliative care, but the concept didn’t take off at the time. Providers kept asking the same question: How do you pay for it without charging patients or insurers?

“I liken it to paddling out too soon for the wave,” she said. “We were out there too soon. … But we didn’t have the right environment, the right incentive.”

A bold idea, rooted in experience

Hoefer is a former hospice and home health medical director and has spent years treating elderly patients. He learned an important lesson when seeing patients in his office: Despite the medical care they received, “they were far more likely to be admitted to the hospital than make it back to see me.”

Doctors, nurses and social workers meet bimonthly to discuss patient cases for the Sharp HealthCare Transitions program in San Diego.

Doctors, nurses and social workers meet bimonthly to discuss patient cases for the Sharp HealthCare Transitions program in San Diego.

When his patients were hospitalized, many would decline quickly. Even if their immediate symptoms were treated successfully, they would sometimes leave the hospital less able to take care of themselves. They would get infections or suffer from delirium. Some would fall.

Hoefer’s colleague, Suzi Johnson, a nurse and administrator in Sharp’s hospice program, saw the opposite side of the equation. Patients admitted into hospice care would make surprising turnarounds once they stopped going to the hospital and started getting medical and social support at home, instead. Some lived longer than doctors had expected.

In 2005, the pair hatched a bold idea: What if they could design a home-based program for patients before they were eligible for hospice? Thus, Transitions was born. They modeled their new program in part on the Kaiser experiment, then set out to persuade doctors, medical directors and financial officers to try it. But they met resistance from physicians and hospital administrators who were used to getting paid for seeing patients.

“We were doing something that was really revolutionary, that really went against the culture of health care at the time,” Johnson said. “We were inspired by the broken system and the opportunity we saw to fix something.”

Despite the concerns, Sharp’s foundation board gave the pair a $180,000 grant to test out Transitions. And in 2007, they started with heart failure patients and later expanded the program to those with advanced cancer, dementia, chronic obstructive pulmonary disease and other progressive illnesses. They started to win over some doctors who appreciated having additional eyes on their patients, but they still encountered “some skepticism about whether it was really going to do any good for our patients,” said Dr. Jeremy Hogan, a neurologist with Sharp. “It wasn’t really clear to the group … what the purpose of providing a service like this was.”

Nevertheless, Hogan referred some of his dementia patients to the program and quickly realized that the extra support for them and their families meant fewer panicked calls and emergency room trips.

Hoefer said doctors started realizing home-based care made sense for these patients — many of whom were too frail to get to a doctor’s office regularly. “At this point in the patient’s life, we should be bringing health care to the patient, not the other way around,” he said.

Across the country, more doctors, hospitals and insurers are starting to see the value of home-based palliative care, said Kathleen Kerr, a health care consultant who researches palliative care.

“It is picking up steam,” she said. “You know you are going to take better care of this population, and you are absolutely going to have lower health care costs.”

Nurse Sheri Juan and social worker Mike Velasco, take health care to the Chinchars.

Providers are motivated in part by a growing body of research. Two studies of Transitions in 2013 and 2016 reaffirmed that such programs save money. The second study, led by outside evaluators, showed it saved more than $4,200 per month on cancer patients and nearly $3,500 on those with heart failure.

The biggest differences occurred in the final two months of life, said one of the researchers, Brian Cassel, who is palliative care research director at the Virginia Commonwealth University School of Medicine in Richmond.

A home visit tailored to each family

Nurse Sheri Juan and social worker Mike Velasco, who both work for Sharp, walked up a wooden ramp to the Chinchars’ front door one recent January morning. Juan rolled a small suitcase behind her containing a blood pressure cuff, a stethoscope, books, a laptop computer and a printer.

Gerald Chinchar’s wife, Mary Jo (right), told the visiting nurse she especially appreciates getting the advice about what her husband should eat and drink. He doesn’t always listen to his wife, Mary Jo said. “It’s better to come from somebody else.”

Late last year, Gerald Chinchar’s doctor recommended he enroll in Transitions, explaining that his health was in a “tenuous position.” Chinchar has nine grandchildren and four great-grandchildren. He has had breathing problems much of his life, suffering from asthma and chronic obstructive pulmonary disease — ailments he partly attributes to the four decades he spent painting and sandblasting fuel tanks for work. Chinchar also recently learned he had heart failure.

“I never knew I had any heart trouble,” he said. “That was the only good thing I had going for me.”

Gerald Chinchar’s wife, Mary Jo (right), told the visiting nurse she especially appreciates getting the advice about what her husband should eat and drink. He doesn’t always listen to his wife, Mary Jo said. “It’s better to come from somebody else.”

Now he’s trying to figure out how to keep it from getting worse: How much should he drink? What is he supposed to eat?

That’s where Juan comes in. Her job is to make sure the Chinchars understand Gerald’s disease so he doesn’t have a flare-up that could send him to the emergency room. She sat beside the couple in their living room and asked a series of questions: Any pain today? How is your breathing?

Juan checked his blood pressure and examined his feet and legs for signs of more swelling. She looked through his medications and told him which ones the doctor wanted him to stop taking.

“What we like to do as a palliative care program is streamline your medication list,” she told him. “They may be doing more harm than good.”

His wife, Mary Jo Chinchar, said she appreciates the visits, especially the advice about what Gerald should eat and drink. Her husband doesn’t always listen to her, she said. “It’s better to come from somebody else.”

Growing acceptance of palliative care

Chinchar (left) is now 77. He told nurse Sheri Juan he never expected to live into old age. In his family, he said, “you’re an old-timer if you make 60.”

Outpatient palliative care programs are cropping up in various forms. Some new ones are run by insurers, others by health systems or hospice organizations. Others are for-profit, including Aspire Health, which was started by former senator Bill Frist in 2013.

Sutter Health operates a project called Advanced Illness Management to help patients manage symptoms and medications and plan for the future. The University of Southern California and Blue Shield of California recently received a $5 million grant to provide and study outpatient care. “The climate has changed for palliative care,” said Enguidanos, the lead investigator on the USC-Blue Shield project.

Ritchie said she expects even more home-based programs in the years to come. “My expectation is that much of what is being done in the hospital won’t need to be done in the hospital anymore and it can be done in people’s homes,” she said.

Challenges remain, however. Some doctors are unfamiliar with the approach, and patients may be reluctant, especially those who haven’t clearly been told they have a terminal diagnosis. Now, some palliative care providers and researchers worry about the impact of President Donald Trump’s plans to repeal the Affordable Care Act and revamp Medicare — efforts that seem to be back in play.

Gerald Chinchar, who grew up in Connecticut, said he never expected to live into old age. In his family, Chinchar said, “you’re an old-timer if you make 60.”

Chinchar said he gave up drinking and is trying to eat less of his favorite foods — steak sandwiches and fish and chips. He just turned 77, a milestone he credits partly to the pre-hospice program.

“If I make 80, I figured I did pretty good,” he said. “And if I make 80, I’ll shoot for 85.”

Complete Article HERE!

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At the End of Life, a Way to Go Gentle

By SUSAN GUBA

[W]hile confronting the prospect of death, people like me — grappling with a diagnosis of advanced cancer — often consider what sort of care they want and how to say goodbye. Given the delicate negotiations in which the dying need to engage, do intensive care physicians with their draconian interventions act like proverbial bulls in a china shop? My fear of pointless end-of-life treatments, performed while I was in no condition to reject them, escalated when I read Dr. Jessica Nutik Zitter’s book, “Extreme Measures: Finding a Better Path to the End of Life.”

Dr. Jessica Nutik Zitter

Dr. Zitter confronts the sort of scenario that haunts me because she works in specialties that are sometimes seen as contradictory: pulmonary/critical care and palliative care.

In her new book, she refers to the usual intensive care unit approach as the “end-of-life conveyor belt.” She argues that palliative care methods should be used to slow down and derail the typical destructive I.C.U. approach that often torments people it cannot heal.

Over the past few years, quite a few studies have indicated that physicians are less likely than the general population to receive intensive care before death. Many doctors choose a do-not-resuscitate status. Dr. Zitter highlights the insight upon which her colleagues base their end-of-life decisions.

According to Dr. Zitter, even what are intended to be temporary intensive care measures can put a patient on that conveyor belt to anguish and isolation. She writes of breathing machines, feeding tubes, cardiac resuscitation, catheters, dialysis and a miserable existence prolonged within long-term acute care facilities. In an account of the evolution of her own ideas about doctoring, she also explains why it remains so difficult to change intensive care units so they can better serve the terminally ill.

“Extreme Measures” analyzes a complex cluster of suspect but ingrained attitudes that bolster hyperaggressive methods. Medical training fosters a heroic model of saving lives at any cost. American can-do optimism assumes all problems can and should be solved. Both doctors and patients tend to subscribe to a “more is better” philosophy. If technology exists, surely it should be used. Physicians’ fears of litigation plays a part, as do patients’ fantasies of perpetual life. For too many, death remains unthinkable and unspeakable.

One of Dr. Zitter’s compelling patient narratives teaches a clear-cut lesson. It involves an 800-pound man “too large to fit into the CT scanner,” but “too unstable to be transported to the nearby zoo’s CT scanner.” Surgery would therefore be impossible. The patient, a 39-year-old she calls Charles, is bleeding from his intestinal tract, his heart is exhibiting erratic behavior, his kidneys have failed and his liver is foundering. Yet he and his relatives want the doctors “to do everything.”

Although Dr. Zitter tries to explain to Charles and his family that chest compressions would break his ribs and electric shocks would burn his skin, they insist on “a full-court-press resuscitation attempt when he died.” To Dr. Zitter, “Running a code on this dying man felt… akin to punching him in the face and would probably have had the same utility.” Honoring his wishes would require breaking the oath: “First, do no harm.”

Other case histories in “Extreme Measures” are more troubling because their moral implications are less obvious. After a dramatic brain bleed from a major clot, a 45-year-old she calls George faces an operation that cannot return him to who he had been. His wife wants to know what Dr. Zitter would do if he were her husband. She explains that her husband would accept paralysis if he could remain communicative with her and their children at home.

Although Dr. Zitter fears that the surgeons who operated on George never broached the topic of his quality of life after surgery, she is heartened upon his return to the I.C.U.: He gives a thumbs-up. “What if, as a result of our talk, his wife had not consented to the surgery? Would I have been his unwitting killer?” This moment of self-doubt is followed by another turn of the screw. When Dr. Zitter later phones George’s wife, she says: “I am a single mother, but with another angry child.”

“Extreme Measures” includes a number of stories that explore the difficulties of talking about the subject of death with dysfunctional families, wracked by depression or feuds, and across racial, religious and ethnic divides. Often and to her credit, Dr. Zitter finds herself baffled, unsure of how to balance cultural priorities, human needs and medical possibilities. Throughout, she struggles personally and professionally to redefine common responses to terminal conditions.

In place of hope for recovery, Dr. Zitter emphasizes “the miracle of time at home, of pain management, of improved quality of life. These are all concepts I have seen families embrace in place of survival — the only concept of hope previously imagined.” And to people refusing “to play God” by withdrawing a breathing tube, she asks whether “they were playing God by keeping [a relative] alive when her body was actively dying.”

For readers who wish to avoid the end-of-life conveyor belt, Dr. Zitter concludes “Extreme Measures” with some practical advice on, for example, procuring a Physician Order for Life-Sustaining Treatment (POLST), a legal directive that emergency responders, paramedics and emergency room doctors are supposed to follow (but sometimes don’t, as Paula Span reported in The Times earlier this week).

Without this sort of documentation of end-of-life wishes, Dr. Zitter writes, a 90-year-old with metastasized prostate cancer ended up paralyzed and tethered to machines after cardiac arrests. “Our well-intentioned resuscitative efforts had crushed his cancer-weakened neck bones, rendering him quadriplegic.”

Passionately and poignantly, Dr. Zitter reminds us that “conveyor belts, regardless of their destination, are not meant for human beings.” Sometimes less is more.

Complete Article HERE!

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Doctors who can’t communicate bad news are technicians, not true physicians

By Jessica Zitter

[I] am a doctor who loves to use technology. But I also understand its limits. As an intensive care physician, I have great respect for the tools I have been trained to use. They have helped me rescue people from the jaws of death. But these tools can do more harm than good when used without first having an honest communication about what they can’t do.

Take Linda. She was born with a defective heart valve, which was replaced when she was in her 50s. She had a pacemaker implanted at the same time. But an errant pacemaker wire chafed the delicate replacement valve, which slowly began to build up scar tissue. It was a subtle undoing, not enough to be obvious but enough to cause increasingly serious health problems. Her heart problems were compounded by kidney failure and a recurring buildup of fluid in her lungs. She became increasingly fatigued and bedbound.

Linda’s poor medical status made a second valve replacement operation very risky. Her cardiologist recommended that she go across the country to a highly respected medical center in the Midwest that specializes in such procedures. Its cardiac surgeons were considered the “A” team for managing problem valves.

Linda’s husband, John, a civil engineer, was confident that reshaping Linda’s valve would restore the rest of her body to health. It would just take cool heads, some design thinking, and the steady hands and expertise of these spectacular surgeons. John possessed the education, resilience, and ingenuity to overcome most obstacles and, when it came to saving his wife’s life, he would spare no effort.

John hit the ground running, inserting himself into the medical team with confidence. He was pleasant but persistent, unafraid to ask questions or express opinions.

The operation was successful, but Linda encountered several severe complications afterward. The doctors included John in conversations about these complications as they cropped up, and even solicited his preferences regarding next steps for her. They continued to discuss with him the minutiae of her physiology and listen to his opinions on which drug or nutritional formula to consider next. There was always another treatment, another high-tech intervention to try.

But the one thing the doctors didn’t offer was the larger truth. Linda was dying. Enlarging blood clots, bleeding deep within her abdomen, the inability to breathe without the support of a machine, profound and progressive weakness, and the deficits of her sick liver: This was an avalanche no “A” team could prevent.

In the third month after the operation, Linda’s suffering growing by the day, John reached out to me through a mutual friend. I listened to his exhausted voice on the phone. It was clear that he was broken and overwhelmed, but he was still struggling to fight each of Linda’s medical problems. While John knew about every medical treatment available, he was blind to the fact that his wife was dying. Even as her body was breaking down in painful and gruesome ways, even as she asked him to let her die, he felt that it was his duty to keep fighting for her life.

All of Linda’s specialists had, no doubt, wanted to do their best for her and for John. But they were unable to say the words that this suffering man needed to hear. There was no outright incompetence, no obvious neglect or laziness, no ill intention — only doctors, the best of the best, extremely smart and eager to help, providing the world-class, organ-focused care they had been taught to provide.

At my suggestion, John asked to talk with a palliative care specialist. Palliative care is a relatively new subspecialty in medicine which focuses on caring for the whole patient instead of just the failing organ. To do this, its practitioners are highly trained in the management of all symptoms that come with serious illness, as well as the communication skills required to share important information about prognosis and treatment options that other doctors often avoid.

Although palliative care has been proven to benefit seriously ill patients in intensive care units, Linda’s team hadn’t offered her this option. With the support of a palliative care doctor, John acknowledged that it was time to honor Linda’s request to be disconnected from the machines that were keeping her alive. She died shortly afterward. But the trauma of Linda’s prolonged dying process left John with a sense of failure, profound pain, and a grief so complicated it would take years to unravel.

Specialists with cutting-edge technical skills and the technology to support them are indeed a type of “A” team. But they often lack a different crucial skill, one I believe all doctors should hone: the ability to communicate bad news. Without that they are an “A” team of technicians, not physicians in the truest sense.

A true physician, to my mind, tends to the whole patient, not just her organs, and cares for the human behind the disease. Unfortunately, Linda and John’s experience was another manifestation of how our system often treats patients who are dying, focusing on cure rather than care, and chasing fantasy even when cure is not an option.

We physicians must come out from behind our machines and high-tech treatments and do something that can be more difficult than replace a heart valve: talk with our patients and their family members about what is really going on. We owe patients this essential information so they can understand the range of options, and their limits. Each of us — physician, patient, and family member — must look carefully at our collective tendency to celebrate technology and to assume that more is always better.

Complete Article HERE!

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Medical advancements have changed the way we die and view the process of death

The process of dying is a more complicated issue today because of advancements in life-sustaining technologies

“Due to innovations in medical technology, our perception of death has changed as we are more able to alter the natural path of the human life.”

By Yasmine Mian

[H]ow we die is a profoundly personal journey.

As college students, we don’t consider the topic of death frequently, let alone the process of dying. However, it is a universal theme that does not discriminate against anyone, no matter their age.

Throughout history, the process of dying is represented differently across cultures and religions. While some religions, like Buddhism and Hinduism believe it marks the beginning of rebirth or reincarnation after death, others, like Christianity, believe it marks the beginning of a journey to Heaven.

Regardless of the beliefs, to fully understand the process of dying and its aftermath, we must examine how the dying process has changed over time.

Throughout our history—particularly recently with medical advancements—the human race has looked far and wide to answer a complex question: What is a natural death? With so many life-sustaining technologies to potentially keep us alive indefinitely, many don’t know what a natural death entails anymore.

Universities like ASU offer courses exploring the cultural and religious aspects of death and dying. 

While the biological process of dying is universal, the behaviors associated with expressing grief are very much culturally bound. Courses like these offered at universities allow students to learn how cultures have developed ways to cope with the process of dying.

Sally Johnson, a professor of psychology at Glendale Community College, believes that all students should study the cross cultural aspects of death.

“By learning about the way different cultures and religions treat the dying process, we can gain more insight into how they deal with the heartache and pain that comes along with death and how it manifests itself in the funeral/death process,” she said. 

However, it is important to remember that the process of dying has drastically changed over the past several decades with the development of modern resuscitative technologies. It seems as if a “natural death” has no place in our society anymore.

The idea of a natural death is merely a reflection of the social and scientific context of the time that death took place in.

When we picture a natural death, we envision an individual lying in bed surrounded by loved ones, taking their last breaths in a place of comfort and homeliness, a sight of peace and tranquility often dreamed of in literature.

However, with the help of modern medicine and innovative technology, our perceptions of natural death have now changed.

Thanks to modern medicine, diseases like polio, scarlet fever and others have been rendered preventable, treatable, or far less common now. This has led to a dramatic extension of life.

However, these new technologies have also been used to prolong the life expectancy of individuals with terminal illnesses, such a cancer.

While the idea of prolonging life might sound like a good thing, it often forces patients, their loved ones and their doctors to make difficult, painful decisions.

In some cases, when patients have no hope of surviving, we use technology and drugs to simply keep them alive in a biological sense. 

Families and doctors may feel as though they need to exhaust every available treatment or medication to prolong the dying process, however, that can be a naive and selfish outlook. 

But what we don’t understand is that there is a difference between being alive and living. Medicine can’t cure everything, but we often act as though death is optional.

The dying process is usually centered around the elderly, who are approaching there last few months of life due to natural causes. When younger individuals do die, it’s usually the cause of an accident or life-threatening disease.

However, individuals of all ages, especially students should be aware of the cultural significance of death, especially as we begin to cope with the loss of loved ones or go into professions where death is common. 

We must recognize the limits of our human knowledge and technology and accept the fact that eventually, all of us will die. As morbid as it sounds, it is a natural process of life and should not be pegged as a taboo topic. 


 

Complete Article HERE!

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Sharing One’s End of Life Choices – via a Mobile Device

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[P]atients can now use their smartphones to share their wishes for end of life care — whether or not they want to be intubated or have CPR, for example — with ambulance crews, loved ones, emergency-room doctors and hospitals.

No more fumbling for a piece of paper, signed by the doctor, to show health-care providers when a terminally ill loved one is rushed to the hospital. Patients in New Jersey can have their wishes become part of their electronic medical record and shared on mobile devices.

The online version of the “Practitioner Orders for Life-Sustaining Treatment” was launched Friday, almost five years after New Jersey authorized the use of a paper form for frail and severely ill patients. The online version will be part of a registry maintained by the New Jersey Hospital Association, with strict safeguards for patient privacy.

“We’re moving beyond having a green paper hanging on the refrigerator,” said Health Commissioner Cathleen D. Bennett, speaking of the paper version of the POLST forms. When patients articulate their preferences, it helps them to live on their own terms at the end of life, she said.

They can also express their goals for care, ranging from a full attack on their disease to palliative or comfort care. The form is signed by both the patient and the doctor or advanced-practice nurse, and is considered a medical order. Emergency personnel can follow it whenever the patient can’t speak for himself.

Joseph Carr, NJ Hospital Association Chief Information Officer, demonstrates how the emPOLST can be accessed electronically and how it can help inform care.

“Through this tool, more health-care providers will have immediate access to critical information they need to treat the patient according to the patient’s health-care preference,” Bennett said. “Patients with smart phones also will be able to share their electronic POLST form with a new physician, specialist or emergency-room doctor.”

In New Jersey, about 11,000 patients a year created POLST forms at each of the hospitals that participated in a study of it, said Joseph A. Carr, chief information officer for the New Jersey Hospital Association, who demonstrated the electronic version.

At a ceremony at the Villa Marie Claire Hospice in Saddle River, Bennett and Betsy Ryan, president of the association, signed an agreement for the association to become the online repository for the POLST forms. The villa, a former convent, is an inpatient hospice for 20 patients that is part of Holy Name Medical Center.

Talking about the end-of-life is one of the most important conversations a family can have, said Michael Maron, president of the medical center. The hospice’s decade of work has taught him that patients feel comforted and empowered when they are able to communicate their choices clearly and effectively, and they are understood by caregivers and loved ones.

The POLST form is available from the Department of Health or the New Jersey Hospital Association. For more information, also see National POLST Paradigm.

Complete Article HERE!

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Five questions with end-of-life doctor

 
By Carmela Fragomeni

[A]merican palliative care doctor and end-of-life activist Bruce (B.J.) Miller was in Hamilton Thursday to talk about Life Before Death.

The free event was part of Hamilton Health Sciences’ new twice-a-year speakers’ series called GreatBigIdeas.

Miller has made it his life’s mission to improve end-of-life experiences for people and their families after an accident in his early 20s left him close to death and a triple amputee.

The Spectator spoke with Miller before his presentation.

Q — Why do you say you have a formal relationship with death?

A — I’ve come close enough to acknowledge it and by acknowledging death, it begins a relationship. You begin to relate to “nothing lasts forever”…I can comment on what it’s like to lose because of my own injuries…We can’t control everything — I chose to keep that in mind as I traverse the day. It helps me live more fully and appreciate what I have while I still have it…Loss is hard. It also proves how precious life is in the first place, which encourages us to enjoy it while we have it.

Q — Why does the health system not serve the dying very well?

A — By choosing to wage war on disease, we end up feeling like losers when we’re not curable and when we die. It’s a shaming…The system does incredible work on cures. But it abandons the people who are no longer fixable. This adds an extra layer of sadness that is unnecessary.

A — How can we make dying a better experience for all of us?

Acknowledging it and pulling it out of the closet …normalizing it, I think that would help…Stop dividing medical issues from social issues…I worry about all the wisdom that languishes in nursing homes. I worry that no one listens.

Q — You say you don’t have to be dying to benefit from palliative care. What do you mean?

A — Everyone conflates palliative care with end of life…Palliative care is about timing in the face of illness and quality of life. It includes end of life but is not focused on it. Hospice is devoted to the end…Palliative care is not running away from death but not focusing on it either.

Q — How can someone live well when facing imminent death?

Well, that process begins before (facing death). If you crafted a world view that includes death, you won’t be surprised when your time comes. That way your persona can remain intact and you can stay whole to the end…even as your body crumbles. If you see death as an unnecessary force, you’ll find yourself at odds with yourself.

Complete Article HERE!