Tag: End of Life Care

Posted on

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!

Posted on

Inferior End of Life Care for Ethnic-Minority Patients With Ovarian Cancer

Study findings show that “important disparities in use of end-of-life care persist among racial and ethnic minorities.”

By

[A]frican-American and Hispanic patients with ovarian cancer in Texas were more likely than Caucasian patients to suffer invasive or toxic treatment and to be admitted to the ICU in their final month of life, according to a study published in the Journal of Clinical Oncology.1

“We found being a minority was associated with receiving intensive and invasive end-of-life care among patients with ovarian cancer,” reported lead study author Jolyn S. Taylor, MD, MPH, of the University of Texas MD Anderson Cancer Center in Houston, and colleagues. “Irrespective of other sociodemographic factors, patients of black or Hispanic racial and ethnic backgrounds were less likely to meet end-of-life quality-care metrics.”

The authors analyzed data from the Texas Cancer Registry and Medicare to assess the treatments administered to 3666 patients with ovarian cancer who died between 2000 and 2012. Seventy-seven percent of the patients were Caucasian, 15% were Hispanic, and 7% were African-American. (One percent of patients were classified as “other.”) Only patients who had received 13 months of Medicare coverage before death were included in the analysis.

Most (72%) patients had been enrolled in hospice but only 64% were still enrolled when they died, the study team noted. Median enrollment was 20 days.

“In the final 30 days of life, 381 (10%) had more than one ER visit, 505 (14%) more than one hospital admission, 593 (16%) ICU admission, 848 (23%) invasive care, and 418 (11%) life-extending care,” the authors reported.

Ten percent (357 patients) received chemotherapy during the final 2 weeks of life.

Ethnic and racial disparities in end-of-life care remained statistically significant in multivariate analyses adjusting for year and age at death, tumor stage, comorbidity index, income and education level, and location of residence. Race and ethnicity correlated more strongly with outcomes than income, education, or geography.

“Several outcomes differed for minorities compared to white patients,” the authors concluded. “Hispanic and black patients were less likely to enroll and die in hospice (black odds ratio [OR] 0.66; 95% CI: 0.50-0.88; P = .004; Hispanic OR 0.76; 95% CI: 0.61-0.94; P = .01.”

Hispanic patients were also more frequently admitted to the ICU (OR 1.37; 95% CI: 1.05-1.78; P = .02), while African-American patients more frequently received multiple ER visits or underwent life-extending procedures (ORs 2.20 and 2.13, respectively; P < .001 for each).

The findings show that “important disparities in use of end-of-life care persist among racial and ethnic minorities,” the authors concluded.

Complete Article HERE!

Posted on

Planning for death: Still not easy to talk about ‘taboo’ issue

Almost 10,000 have completed end-of-life arrangements through Advance Care Planning

Madam Amiron Jee

By Foo Jie Ying

[A] former nurse, she has seen her fair share of patients dragging out their final days on life support.

She is also a cancer patient. When she felt her body “going downhill” in late 2014, the Singapore General Hospital (SGH) volunteer, who had heard of Advance Care Planning (ACP) decided to find out more about about it.

She later completed her ACP with the SGH social service department.

The mother of three told The New Paper: “When I fell quite ill then, I was thinking, good thing I had this thing done. I informed my children (about my ACP).”

ACP is a series of conversations about one’s wish for care and treatment in the event of difficult medical situations, when one becomes too ill and is unable to make decisions for oneself.

It can be conducted informally between individuals and their loved ones at home using a workbook by the Agency for Integrated Care (AIC), or formally with trained facilitators present.

Close to 10,000 people have completed formal ACPs to date, since AIC rolled it out in 2011.

The Ministry of Health will reach out to 25,000 Singaporeans over the next four years, said Minister of State Chee Hong Tatlast month.

ACP will also be expanded to different care settings, like specialist outpatient clinics and in primary care, he said.

There is reluctance to talk about death because most people think a medical crisis will not happen to them, said Mr Mark Lin, who started the Good Death project to encourage early end-of-life planning.

The deputy director of Special Projects (Eldercare) at charity Montfort Care told TNP: “The idea of talking about planning for situations if anything happens to yourself can be quite a taboo.”

Madam Jee’s husband is one such example.

The couple had approached SGH’s social service department together, but unlike her, he refused to do an ACP because it is “pantang” (Malay for taboo).

But for Madam Jee, who battled breast cancer in 1998 and lung cancer in 2015, and was diagnosed with Stage 4 brain cancer last year, conversations about death are a matter of pragmatism.

“For me, I’m doing this partly for the sake of my children. I’m a cancer patient. For cancer patients in the terminal stage, it’s very hard to recover because the cancer cells are eating the body up.

“I don’t want my children to feel guilty for suggesting to let me go in peace instead of putting me on artificial nutrition to survive. It may sometimes stay with them, with them thinking ‘I shouldn’t have done that’,” she told TNP.

With her funeral arrangements made, the Muslim also does not have to worry about her three US-based children being unable to rush back in time for her burial, which must be done as soon as possible..

While it is still not easy to talk about end-of-life issues, AIC deputy chief executive Wong Kirk Chuan told TNP he hopes to overcome this by working with partners like the Singapore Hospice Council to raise awareness on these issues.

Instead of waiting for a medical crisis, Dr Wong encouraged early ACP conversations, which offer peace of mind.

Mr Lin, whose youngest clients include a 38-year-old couple, agreed. He said: “The whole point of the ACP is not what you put on the document, although it is a formal record of your wishes. It’s about the process of talking about such things.

“ACP is like a health booklet that follows you as you age. It’s something you have to keep updating.”

Complete Article HERE!

Posted on

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!

Posted on

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

By

[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!

Posted on

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!

Posted on

We’re dying more at home. That’s good

[F]or many years now, pollsters have asked Americans where they would rather die, in home or in a hospital.

Once the initial shock of the question wears off (“Who said I was going to die in the first place? How dare you!”), most of us answer that we would prefer to die at home, in familiar settings, surrounded by loved ones. It makes sense.

Then, of course, most Americans go off and die in the hospital, in large part because they haven’t made their end-of-life wishes known to people who might have to make those decisions. (Or, in the alternative, because they haven’t thought that much about their end-of-life decisions in the first place.)

Oregon is an exception. And that’s a good thing.

recent article in The New England Journal of Medicine noted that nearly two-thirds of Oregonians who died in 2013 did so at home, as opposed to 39.6 percent of Americans. (The article relied on statistics from Medicare and defined “home” as wherever the person was living at the time of death.)

The article, by Dr. Susan W. Tolle, head of the Center for Ethics at Oregon Health & Science University, and Dr. Joan M. Teno of the University of Washington, had other good news for Oregon residents who might die someday:

  • The rate of intensive care unit use in the last 30 days of life in Oregon was 18.2 percent, as compared with 23 percent in Washington state and 28.5 percent in the rest of the United States.
  • Patients who were hospitalized in the last month of life were more likely to be discharged to their homes in Oregon (73.5 percent) than in Washington (63.5 percent) or in the rest of the United States (54.2 percent).

These numbers likely will not surprise anyone who’s followed Oregon’s efforts to lead the way in the tricky issue of end-of-life care. In their article, Tolle and Teno argue that one big step forward came in 1995, when Oregon created a POLST program.

POLST is an acronym for Physicans Orders for Life-Sustaining Treatment; the program essentially allows patients to document their preferences regarding the use of life-sustaining treatment. Ideally, medical providers have access to a patient’s POLST documents and abide by their instructions.

But just having a POLST program in place is not enough, the article notes: After all, Washington state has a similar program, but it trails Oregon in some of the metrics that Tolle and Teno were tracking.

The difference between the two states? At the risk of oversimplifying, a lot of it comes down to execution and follow-through.

In the decades since Oregon adopted the POLST program, the state has developed educational materials about it, organized conferences to spread the word, researched the issue and (perhaps most importantly) maintained a statewide registry of POLST participants. That electronic registry allows medical providers throughout the state to access it to check on a patient’s wishes at the end of life; that’s important because those patients may not always be able to speak for themselves.

Washington had a registry in place, but abandoned it because it wasn’t widely used.

Oregon’s POLST system isn’t perfect: For example, Tolle and Teno note that one-click access to the POLST form from a patient’s electronic medical records is not yet available in most hospitals. We need to keep measuring our progress and improving our systems.

Perhaps the best part of filling out the POLST forms is that it provides a starting point for conversations that are easy to put off. No one likes talking about death. But talking about it now might help ensure that we can die on our own terms.

Complete Article HERE!