Category: Healing and Helping Professionals

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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!

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Learning to talk about death and dying should start early in doctors’ careers

By Junaid Nabi

[W]hen I started medical school, I fully expected to learn how the nervous system works, why heart attacks happen and what to do to stop them, and how the immune system sometimes turns against the body and causes autoimmune diseases. One of the things I needed to learn but didn’t was how to talk with people about death and dying.

To fill that gap, I enrolled in a course at Harvard Medical School on communication strategies during end-of-life care. It was designed to help budding physicians understand how spirituality, end-of-life care, and medicine interact. What I learned surprised me.

I found out that I wasn’t alone in feeling that I was ill-prepared for having effective end-of-life conversations. Physicians in general tend to be particularly limited in their ability to discuss issues such as how long patients will survive, what dying is like, or whether spirituality plays a role in their patients’ last moments.

At first glance, physicians’ poor understanding of death and the process of dying is baffling, since they are supposed to be custodians of health across the lifespan. Look deeper, though, and it may reflect less the attitudes of physicians themselves and more the system that nurtures them. After all, we train vigorously on how to delay the onset of death, and are judged on how well we do that, but many of us get little training on how to confront death.

At one of the seminars that are part of the course, a young man was asked about how he felt during the final days of his mother’s struggle with cancer. “Pain is not suffering if it has a meaning; if it doesn’t, pain and suffering are the same thing,” he said.

That juxtaposition of pain and suffering struck me as an important reminder of the vital role physician communication plays from a patient’s point of view. I realized that a transparent communication strategy can ease suffering and make pain more bearable.

In the process of my coursework, I also realized that significant communication barriers exist between physicians and patients to discussing end-of-life care. When physicians aren’t trained about how to approach patients and their families regarding end-of-life decisions, it’s difficult, if not impossible, to provide the care they want and need.

In one survey, nearly half of the medical students and residents who responded reported being underprepared to address patient concerns and fears at the end of life. About the same percentage said that “dying patients were not considered good teaching cases.” In other words, patients on palliative care with no need of further interventions were seen as offering little in the way of imparting clinical knowledge — even though they might have been wonderful cases for learning more about death and dying.

It’s still unclear whether such limitations arise from personal difficulty talking about this sensitive topic, an inadequate medical curriculum, or a lack of training during residency on how to communicate with terminally ill patients.

When a robust rapport between patient and physician is lacking, or when a physician hasn’t taken enough time to lay out all the options, hospitals tend to follow the “standard” protocol: patients — often at the insistence of family members — are connected to several intravenous lines and an intubation tube, or put on life-support machines, all because the patient or the family never had a clear conversation with the medical team about the severity of the disease and its progression.

That’s not how physicians prefer to die. In a famous essay, an experienced physician wrote that most doctors would prefer to die at home, with less aggressive care than most people receive at the ends of their lives. They understand that such efforts are often futile and take away from the precious time that could be spent in the company of family and friends.

Intensive management of patients with poor prognosis can result in severe emotional damage to patients and their family members. They also have significant policy implications: On average, 25 percent of Medicare payments go to patients in the last year of life, with one-third of that spent in the last month, often on clinical services with negligible benefits.

Physicians certainly share some of the blame for these gaps in communication. But we need to be aware of the role health care systems play in shaping end-of-life interactions. Over-treatment is often encouraged, and with little guidance or feedback on how to navigate end-of-life care, physicians can feel vulnerable to malpractice lawsuits. Due to ever-changing regulations, most interns, residents, and attending physicians are forced to spend more and more time typing into their patients’ electronic health records and less time sitting with their patients, talking with them and understanding what they want and need at the ends of their lives. The issue of resource allocation may also play a role. Medical centers often suffer from a shortage of physicians, and struggle to balance comprehensive teaching with quality patient care.

Complete Article HERE!

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Talk about death, be kind and trust your instincts: tips for new nurses

NHS nurses offer advice on when to question doctors and how to deal with patients you don’t like

‘Good nurses are really tuned into their gut instinct and new nurses should learn to trust it.’

Don’t be afraid to question senior doctors

Never be scared to question a doctor, however senior they may be. We are our patients’ advocates and can protect them from potential mistakes. A good doctor will respect you for this. If you feel something isn’t right but are not confident enough to challenge a situation yourself, go to someone you know, trust and respect – watch how they deal with it and learn.
Emma McLellan, staff nurse in the ICU, Manchester

Learn to trust your gut instinct

I believe good nurses are really tuned into their gut instinct and new nurses should learn to trust it. A nurse’s gut instinct is their deeply grounded knowledge base developed in practice, their critical awareness and what they have learned from previous situations plus an overall sense of knowing the patient well. You’ll just know something doesn’t add up, or you may convinced there’s something more going on, so make sure you go that extra mile to cover all bases. Maybe, for example, all of a patient’s baseline observations are normal, but you just sense that there is still that underlying thing you can’t put your finger on – monitor them really closely because you’ll often be right.
Zoë Hartwright, community mental health nurse, Shropshire

Death is a part of nursing – talk about it with patients

Death is a regular part of nursing. Patients need someone to talk frankly about death. We plan births for nine months, but talking about death always seems awkward and hard. One of the best things you can do for a patient who is nearing the end of their life is to give them opportunities to talk about their death and how they would like it to be. Being able to give advice and support to help them get their affairs in order can relieve a lot of their pain and worry. It is possible to have a good death but the conversations have to be had.

When death is unexpected this is very hard to deal with. I worked in an accident and emergency department for 10 years and learned that life and death is unpredictable. I have seen many patients and nurses struggle with the last words that they said to that person, so I try to adopt the approach of being kind. Really think about what you say during emergency situations – it is likely that patient can hear you right to the end – even if the rest of their body is not responding. Use their name, talk calmly to them, explain everything you do as you are doing it. Speak to them as if they are awake.
Christine Bushnell, advanced nurse practitioner, nurse partner in a GP surgery and trainer, Harrow

Be kind to patients’ relatives

It’s very hard not to take it personally when relatives are difficult with you. As a nurse in paediatrics, I found it tough at first as a newly qualified nurse without any children of my own. Now that I am older and I have my own children, it is different. When dealing with emotional or difficult relatives, try to put yourself in their position and understand that they do not have anything against you – they are just desperately worried about their child, for example, and you may be the nearest person to them and so they might take it out on you. It is important to listen without judging and, if treated with hostility, try to respond with kindness. Speak to your manager if certain behaviour from a family member is bothering you, but ultimately try to be understanding.

Don’t say, “I know how you feel” when you have never been in that situation. Instead you can say something like: “I can’t begin to imagine how worried you must be, but we are doing everything we can, if you have any questions please ask and if I can’t answer them I will find someone who can, etc”.
Sally al-Habshi, paediatric emergency nurse, Leicester

Be nice to healthcare assistants

Always be nice to healthcare assistants, they’re amazing. Make lists of jobs you need to do – a good list helps everything. And always remember that when you’re having a bad day, your shift will come to an end and you can go home and eat pizza.
Laura Thompson, ward manager, London

Complete Article HERE!

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Hospital volunteers unlock deep mysteries with dying patients

David Wynn, left, Edie Bennett, right, and Carolyn Lyon, center, are volunteers in the St. Joseph Hospital NODA program in Orange. No One Dies Alone is to provide a reassuring presence to patients who would otherwise be alone.

by DAVID WHITING

[T]here is life and death and the in-between.

It is the in-between where hospital volunteers such as Edie Bennett and David Wynn make sure that no one dies alone.

Over nearly a decade of volunteering at St. Joseph Hospital of Orange, Bennett and Wynn have comforted people going gently into the night, endured sepsis many would run away from, even witnessed people crossing death’s door and suddenly reviving.

But perhaps there is nothing Bennett and Wynn say that is more comforting than hearing when someone is unresponsive humans connect on far deeper levels than you might expect.

It has to do with love. But sometimes it also has to do with jazz.

MOVEMENT OF LOVE

Family and friends gathering with someone near death is as old as humanity. But in the modern world, there is a raft of reasons dying patients face death alone.

Some have families too far away to arrive in time, some are homeless and without support, others are estranged from loved ones, some simply outlive everyone they know.

The No One Dies Alone movement traces its roots to a rainy Oregon night in 1986.

Sandra Clarke, a nurse at Sacred Heart Medical Center in Eugene, tended to an elderly dying man who asked, “Would you stay with me?’

Clarke was especially busy with six patients, according to reports, and promised she would soon be back. But by the time she returned, the man had passed on.

For years, the incident haunted Clarke. Eventually, she discussed with staff her idea of volunteers staying with dying patients. PeaceHealth, the corporate organization of Sacred Heart Medical Center, approved her vision and in 2001 No One Dies Alone was born.

Today, an estimated 200 hospitals are involved.

Wynn first thought about dying alone when he and his family happened to be in Las Vegas and a family member died while they were there. Later, he heard about No One Dies Alone through a hospital newsletter after being treated for a condition that nearly killed him. He recalled dark, sometimes scary nights when staff held his hand and comforted his worries away. “It was like I got hit on the head with a board.

“I don’t want to sound like ‘St. Dave,’ but I wanted to do something that made a difference.”

Busy with family, camping, skiing and a demanding job as an AT&T senior project manager, Wynn offered to volunteer. Soon, he was coaxed into coordinating the program.

That was nearly a decade ago.

DEEP CONNECTIONS

St. Joe’s, as the hospital is affectionately known, averages one dying alone incident a month. That may not sound like much, but keep in mind that death is unpredictable. Some people pass within a few hours, others linger for weeks — and some walk away.

Wynn recalls a woman dying one New Year’s Eve. On his way home from a ski trip with his wife, he agreed to answer the call thinking he would be home from the hospital before midnight.

But midnight stretched to 1 a.m., then 2 a.m., then 3 a.m. Dozing in a chair, Wynn woke to daylight and the woman sat bolt upright in bed asking, “Who are you?”

Wynn stammered he was simply there to keep her company.

Soon, the woman returned to her nursing home.

When a call goes out, an army of some 45 volunteers split into four-hour, round-the-clock shifts.

Wynn recalls his first patient, a woman in isolation dying of cancer. When he opened her door, the odor nearly knocked him over. He gathered himself, sat down, took a glove off and touched the woman’s arm to assure her that she was not alone.

“It’s not always pleasant. Sitting there for hours with a gown and mask on can be difficult,” Wynn, a 61-year-old Anaheim Hills resident, allows, “but every human being deserves to die with dignity.

“I think touch is very important.”

As Wynn talks, I think of my father holding my mother’s hand and caressing her arm just before Thanksgiving as she lay in a coma. As her heartbeat slowed, I too held her hand and gently kissed her forehead.

But I wondered whether we do these things to sooth our souls or for the souls of others.

Wynn is convinced communication — both sound and kinetic — goes back and forth regardless of the patient’s responsiveness.

“When I was non-responsive,” he says of his time as a patient, “I could still think, I was still aware.”

Volunteers talk, watch TV, listen to music with patients. “Each case,” Wynn explains, “takes on a life of their own. There’s a connection.”

Wynn learned one of his patients was a musician so Wynn played classical music. But the patient grew restless so Wynn turned off the music. Later, he learned the man was a jazz musician and Wynn played something off a 1959 Miles Davis album called “Kind of Blue.”

The patient’s lips crinkled into a slight smile.

‘SACRED ENCOUNTERS’

When Bennett learned her father was in the hospital in Arizona, the retired lobbyist drove eight straight hours. But she just missed being there when dad was still alive.

The event prompted the 68-year-old Orange resident to volunteer. “You’re sharing the last stage of life’s journey,” Bennett offers. “For me there’s no more sacred an encounter.”

Both Bennett and Wynn remember every patient as if it were yesterday. One was a 26-year-old woman with a long-term disease Bennett had met at St. Joe’s the year before. Back then, the woman had a tattered stuffed animal. Bennett brought a playmate, a furry toy.

“She was sipping from a straw,” Bennett recalls, “lime Jell-O. I stroked her hair. She could have been my daughter.”

Bennett looked at the young woman and promised, “You will always be my angel.”

“Thank you,” the young woman said before slipping away.

“I still think of her,” Bennett allows, “and that was almost two years ago.”

Then there was the time when Bennett was with a dying woman gasping for air. Her breathing slowed to six breaths a minute. Soon, it was so quiet it appeared she was about to take her final breath.

Suddenly, the patient muttered something. Bennett couldn’t make it out. Another sound, “water.”

Within an hour, the patient sang, “Water, water.” Then she ate chocolate pudding. Soon, she was discharged.

“It’s rare,” Bennett says, “but it does happen.”

The mystery of the in-between.

Complete Article HERE!