A Racial Gap In Attitudes Toward Hospice Care

By Sarah Varney

Pastor Vernal Harris and his wife Narseary Harris before regular church services at Prince of Peace Temple in Buffalo, N.Y. After experiencing hospice care during the death of their son Solomon, Harris and his wife have become advocates of Hospice care for the terminally ill in the communities they serve. (Photo by Brendan Bannon for The New York Times)
Pastor Vernal Harris and his wife Narseary Harris before regular church services at Prince of Peace Temple in Buffalo, N.Y. After experiencing hospice care during the death of their son Solomon, Harris and his wife have become advocates of Hospice care for the terminally ill in the communities they serve.

BUFFALO — Twice already Narseary and Vernal Harris have watched a son die. The first time — Paul, at age 26 — was agonizing and frenzied, his body tethered to a machine meant to keep him alive as his incurable sickle cell disease progressed. When the same illness ravaged Solomon, at age 33, the Harrises reluctantly turned to hospice in the hope that his last days might somehow be less harrowing than his brother’s.

Their expectations were low. “They take your money,” Mrs. Harris said, describing what she had heard of hospice. “Your loved ones don’t see you anymore. You just go there and die.”

Hospice use has been growing fast in the United States as more people choose to avoid futile, often painful medical treatments in favor of palliative care and dying at home surrounded by loved ones. But the Harrises, who are African-American, belong to a demographic group that has long resisted the concept and whose suspicions remain deep-seated.

It is an attitude borne out by recent federal statistics showing that nearly half of white Medicare beneficiaries enrolled in hospice before death, compared with only a third of black patients. The racial divide is even more pronounced when it comes to advance care directives — legal documents meant to help families make life-or-death decisions that reflect a patient’s choices. Some 40 percent of whites aged 70 and over have such plans, compared with only 16 percent of blacks.

Instead, black Americans — far more so than whites — choose aggressive life-sustaining interventions, including resuscitation and mechanical ventilation, even when there is little chance of survival.

The racial gaps could widen when Medicare is expected to begin paying physicians in January 2016 for end-of-life counseling, and at a time when blacks and other minorities are projected to make up 42 percent of people 65 and over in 2050, up from 20 percent in 2000.

At the root of the resistance, say researchers and black physicians, is a toxic distrust of a health care system that once displayed “No Negroes” signs at hospitals, performed involuntary sterilizations on black women and, in an infamous Tuskegee study, purposely left hundreds of black men untreated for syphilis.

Dr. Maisha Robinson, a neurologist at the University of California, Los Angeles.

“You have people who’ve had a difficult time getting access to care throughout their lifetimes” because of poverty, lack of health insurance or difficulty finding a medical provider, said Dr. Maisha Robinson, a neurologist and palliative medicine physician at the Mayo Clinic in Jacksonville, Fla. “And then you have a physician who’s saying, ‘I think that we need to transition your mother, father, grandmother to comfort care or palliative care.’ People are skeptical of that.”

Federal policies surrounding hospice also arouse suspicion in black communities since Medicare currently requires patients to give up life-sustaining therapies in order to receive hospice benefits.

That trade-off strikes some black families, who believe they have long had to fight for quality medical care, as unfair, said Dr. Kimberly Johnson, a Duke University associate professor of medicine who has studied African-American attitudes about hospice.

Dr. Johnson said her black patients were more likely to believe there are actual religious prohibitions against limiting life-sustaining therapy, and that suffering can be redemptive, or “a test from God.” And those beliefs, she added, were “contrary to the hospice philosophy of care.”

But now some doctors and clergy members are trying to use church settings to reshape the black community’s views, incorporating the topic in sermons, Bible study groups and grief and bereavement ministries.

Dr. Robinson, who is black and a daughter of Tennessee pastors, has been helping pastors develop faith-based hospice guidelines. She tells them, “God can work miracles, yes he can, but even in hospice.”

That message recently rang out from the pulpit at God Answers Prayer Ministries, an African- American church in South Los Angeles, as Bishop Gwendolyn Coates-Stone tried a sermon theme on advance care.

“It’s such a great cost to hold on to some of those sicknesses and diseases that eventually are going to take us out,” she exclaimed into a microphone, bobbing and weaving in a swirl of royal purple robes. “Just like Jesus talked about his death and prepared his disciples for his death, we ought to be preparing our disciples for our death!”

In a moment of benediction, Bishop Coates-Stone made a direct plea: “Help us Lord to have the courage to have conversations with our families,” she said, “that will also not leave them wandering and wondering, ‘What should I do in case of the death of a loved one?’”

A gathering of older blacks convened recently by Dr. Robinson in Leimert Park, a middle-class Los Angeles neighborhood, underscored the challenges such efforts still face.

“Hospice has not been a good place for African-Americans, unless you’re in a white facility and usually you’re one of few black people there,” said one woman, who along with others attending the gathering asked not to be identified in order to speak frankly.

That sentiment was greeted by nods from others in the group. “It gets into money,” another woman said. “The treatment is a little bit better, but then there is still the discrimination.”

Advance directives, in particular, are often seen as sinister, a way for insurance companies to maximize profits. “If you say you want at all costs to live, and they say, ‘Well, your insurance company doesn’t allow that,’ then they’re going to pull the plug anyway,” said the host of the gathering, Loretta Jones, 73, founder of Healthy African-American Families in Los Angeles.

To help allay those concerns, physicians need to be more explicit during end-of-life discussions, Dr. Robinson said. “We have to be much clearer about why we’re trying to have those conversations, or we’ll continue to see a pattern of people who really want life-sustaining interventions even when there’s limited potential benefit.”

Camille Wicher, vice president of clinical operations at Roswell Park Cancer Institute in Buffalo, who has studied African-Americans’ end-of-life choices, said hospitals needed to enlist black families who have had good hospice experiences to share their stories with friends and church members.

“That’s how we learn,” she added. “We learn from each other.”

The Harrises are trying to use their experience to carry out that work.

The agony of their son Paul’s death in a hospital room informed their treatment decisions when their next son, Solomon, became gravely ill. When his doctor conceded that blood transfusions were of little help, Solomon assented to hospice care in his parents’ home. If he was going to be robbed of his future, Solomon would not, his parents decided, be robbed of a good death.


As his health failed, nurses from the hospice in Buffalo managed his pain and bathed him tenderly. A social worker helped the family grieve and counseled his young children.

All the while, parishioners from his parents’ church visited Solomon, amazed to find that hospice was not the grim banishment they had always envisioned.

“One of the members said, ‘I thought you were going to put Solomon in hospice,’ ” Mrs. Harris recalled. “I said, ‘We did.’ ‘Well, when is he going?’ I said, ‘They come here.’ ‘They come to your house?’ ‘Yeah, they’re taking care of him right here.’ ”

There was even time for reflection, as Solomon wrote in a poem called “After Life.”

“Fear death?” he wrote. “No, I await death.”

Solomon died a short while later, but the Harrises say his death has had a lasting impact.

“The people in our immediate circle now view hospice positively,” Mrs. Harris said. “I think our experience was powerful enough that it changed people’s attitudes.”

Mr. Harris, the pastor of Prince of Peace Temple Church of God in Christ, often evangelizes about hospice during his Sunday morning sermons, while Mrs. Harris has enlisted the wives of black pastors in Western New York, known as the “First Ladies,” to counter negative views about palliative care. At a recent meeting, the women discussed older church members who might benefit from hospice, and Mrs. Harris wanted to hear how parishioners in the women’s churches responded to some recent outreach.

“It really opened up people’s eyes to the negative stigma of it, feeling like, ‘I’m just putting my loved one away, and not caring for them,’ ” said Joyce Badger of Bethesda World Harvest International Church in Buffalo. “The power of knowledge that we’ve gained is really going to help our community.”

Complete Article HERE!

The Liberty to End One’s Life

How the marriage equality movement led the way for death with dignity.


terminally ill.
As the death with dignity movement builds a critical mass, social and political pressure may force even conservative states to consider easing restrictions on physician-aided suicide.

Aja Riggs doesn’t want the state of New Mexico to dictate how she’ll die. Riggs suffers from uterine cancer—currently in remission, but likely to return—and fears it will leave her in excruciating pain during her final days. To avoid so much torment, Riggs wants to be sure her doctor can ease her into death through a painless overdose if she so chooses. But New Mexico law prohibits physician-assisted suicide. So Riggs, along with two oncologists, is suing to have the statute struck down as a violation of her fundamental rights under the state constitution.

Initially, Riggs scored a major win in a state district court, which found that terminally ill patients have a fundamental liberty interest in securing assisted suicide. Earlier this month, however, an appeals court reversed that ruling. The setback is probably temporary. Bolstered by a blistering, incisive dissent, Riggs is taking her case to the progressive state Supreme Court. There, she hopes she can persuade the justices to force New Mexico to respect the legal rights of dying patients.

Court challenges to assisted suicide bans are nothing new. In a 1997 case calledWashington v. Glucksberg, a badly fractured U.S. Supreme Court rejected a broad challenge to Washington’s prohibition. Five members of the court held that the right “to assistance in committing suicide is not a fundamental liberty interested protected by the Due Process Clause.” Only “those personal activities and decisions” that are “deeply rooted in our history and traditions,” the majority wrote, are protected by the Constitution—and assisted suicide is not “deeply rooted” in the American tradition. At the same time, five justices also found that “suffering patients” may have “a constitutionally cognizable interest in obtaining relief from the suffering that they may experience in the last days of their lives.”

This apparently contradictory ruling was the handiwork of Justice Sandra Day O’Connor. A consummate baby-splitter, O’Connor tried to bridge the gap between the court’s liberal and conservative blocs. Instead, she created a paradoxical ruling that has, ever since, stood on extremely shaky constitutional grounds. In fact, the court’s recent ruling in the same-sex marriage case Obergefell v. Hodges seriously dented the validity of Glucksberg by replacing its crabbed logic with a more modern, expansive definition of “liberty.” (Chief Justice John Roberts accused the Obergefellmajority of “effectively overruling” Glucksberg—as though that’s a bad thing.)

The New Mexico Constitution has a due process clause that’s virtually identical to the one in the United States Constitution, which holds in the Fifth and 14th amendments that no one shall be deprived of “life, liberty, or property, without due process of law.” Like the federal version, New Mexico’s protects substantive rights fundamental to individual dignity and autonomy. But the New Mexico Supreme Court has declared that its state constitution may be interpreted more expansively, to encompass a grander definition of individual dignity. Riggs argues that the New Mexico Constitution should protect her right to choose when to end her suffering.

001In a somewhat apologetic decision, the court of appeals refused to allow this more generous reading, holding that the state may force a terminally ill patient in extreme agony to remain alive until her life reaches “its natural end.” But in dissent, Judge Linda M. Vanzi laid waste to the majority’s argument, writing that it “reflects a shocking disrespect for the individuals whose circumstances would bring them to seek aid in dying.” Vanzi first notes, correctly, that Obergefell seriously erodes—and maybe even overrules—Glucksberg. (Same-sex marriage, after all, certainly isn’t “deeply rooted” in American history.) She then explains that even ifGlucksberg remained good law, she would “reject it as unpersuasive, flawed, and inadequate to protect the rights of New Mexicans.” Instead, Vanzi writes that New Mexico’s own traditional respect for individual autonomy should lead the court to hold that the state’s citizens have a “liberty right to aid in dying from a willing physician.”

And if New Mexico’s due process clause implies this right, another provision all but demands it. In a passage unique to the New Mexico Constitution, “all persons” in the state are promised “natural, inherent and inalienable rights.” Among these are “the rights of enjoying and defending life and liberty … and of seeking and obtaining safety and happiness.” This provision, Vanzi asserts, “affords New Mexico citizens the right and agency to defend their lives and liberty by availing themselves of aid in dying” when terminally ill. The state simply cannot justify “intrud[ing] upon the doctor-patient relationship as it relates to the constitutional right to aid in dying.” Vanzi concludes:

The question at the heart of this case is who has the right to decide when and how a mentally competent, terminally ill New Mexican will end her life after the options for meaningful improvement of her terminal condition have been exhausted, such that “life” means being forced to endure unbearable suffering until death arrives. … Other choices and decisions central to personal autonomy and dignity have long enjoyed the status of constitutionally protected liberty interests. I would hold that the New Mexico Constitution protects aid in dying as a liberty interest.

Vanzi’s brave, powerful dissent is likely to become a rallying cry for the death with dignity movement. But it is also aimed squarely at the New Mexico Supreme Court itself, to which Riggs will appeal her case. There, she may have more luck: All five justices are Democrat-affiliated and have proven quite liberal on issues of personal dignity, including marriage equality. Should they side with Riggs, New Mexico will become the fifth state where terminally ill patients are afforded the liberty to end their lives. That might help create momentum in other states whose legislatures are considering assisted suicide measures.

As the death with dignity movement builds a critical mass, social and political pressure may force even conservative states to consider easing restrictions on physician-aided suicide. This model worked gangbusters with same-sex marriage, and death with dignity advocates are clearly hoping to employ it for their own cause. Eventually, they may even achieve an Obergefell­-type ruling for the movement declaring that the American conception of liberty includes a right for terminally ill patients to choose when to die.

Of course, opponents of physician-assisted suicide like to argue that legislatures, not the courts, should decide the legality of the practice. Yet the constitutional guarantees of life and liberty ring hollow if patients like Aja Riggs are deprived the liberty to end their own lives.

Complete Article HERE!

Therapy Dog Gently Comforts Hospice Patient While They Both Listen To Poetry

hospice dog 3


By Regina Lizik

JJ the dog has a very special job. She’s a therapy dog who spends a lot of her time comforting patients at a hospice in Oregon. Recently, JJ’s mom, nurse Tracy Calhoun, posted a video one of JJ’s therapy sessions to Facebook.

It shows JJ comforting a patient who, sadly, does not receive many visitors. Her time with the pup is very precious. In the video, they spend their time sharing snuggles and listening to a poem by W.B. Yeats.

JJ’s mom translated the pup’s dog thoughts on Facebook:

“She cannot see and often does not wake up, but she did like having her hand on my fur. She was very calm during my visit. We were listening to Yeats, by the way. I was very insistent to have her touch me, more so than usual. We fell asleep later with her hand splayed on my head, both of us snoring.”

You can follow JJ’s amazing work on her Facebook page.

Complete Article HERE!

I Asked Doctors How They Would Prefer To Die

What care do doctors want to have when they reach the end of their lives?


Isobel El-Shanawany, GP

“The hospital is my safe place. When I had my baby, I wanted the labour ward. I wanted to hear the beeps, people rushing around, that makes me feel secure. But I know full well that hospital is not a nice place when you’re 80 years old and dying.

“I’m 36. It’s so difficult to think of yourself as an 80-year-old frail person. Knowing what I know, I think I’d want less intervention than most patients seem to want. Patients have watched ridiculous programmes on telly, and think that CPR does work, and that they can be brought back from the dead and have a lovely happy life. In reality, it doesn’t happen.

“I wouldn’t want to go to intensive care unless they knew that I had a reversible cause and the outlook was good. I certainly wouldn’t want artificial feeding. It’s hard to look ahead. Now, as the mother of a 3-year-old who needs me, I’d probably say I want everything possible done just in case the outlook could be good and I could be there for him, but trying to picture myself as an 80-year-old is quite different. I think if you were to ask most doctors where they would want to die, they’d say at home, with the people who love them.

“On my first job, I just didn’t understand why with one patient we weren’t doing everything we could be doing, and my consultant said, ‘You have to learn when you’re prolonging life and when you’re prolonging death.’ It sounds cheesy, but it’s true, and it’s a fine line. So much of what we can do does prolong death, and prolongs pain.”

Kate Stein, child and adolescent psychiatrist

“What would I want? It depends. If I was a little old lady, and I was really fragile and I’d had a good innings, I think I wouldn’t particularly want the resus, the whole caboodle, because you crack people’s ribs and it’s really quite undignified and you very rarely get them back. But of course I’d want people to try their absolute hardest if I had some weird cardiac problem and I suddenly collapsed next week. I’d really want people to work hard on me in that case.

“For all the cardiac arrests that I saw in A&E, I never saw anyone come back, and it was always people who’d been dead for quite a long time. There was one girl who was young, my age; she was epileptic and had had a seizure in the bath. It was awful. I think we tried to resuscitate her for literally an hour, but it was obvious that she was dead on arrival.

“I’ve cracked ribs before, and it’s not nice. The sound of a cracking rib is haunting, and it happens, especially with the big guys who do CPR in A&E. It doesn’t happen every time, but it often does, and it’s not very nice.

“As doctors you see the practicalities of these interventions, of tube feeding and ventilation and so on. You’re not shielded from that stuff. I’ve always said that if I were to develop some chronic thing, god forbid, like motor neurone or something, I’d definitely want to have the option of going to Dignitas and being able to control it in my own way. I’m sure that’s been guided by my experience as a doctor. Personally, I’d rather have that option, so my last moments can be with my loved ones, drinking my favourite wine, listening to my favourite music, rather than in a grotty hospital somewhere.”

Anonymous, GP

“I’ve been involved in countless attempts to resuscitate patients, with varying degrees of success. I have also had to care for people kept alive solely with feeding tubes, living in nursing homes, rarely visited by family.

“I wouldn’t want CPR unless I have the good fortune to keel over in a district general hospital or outside an ambulance station. I have seen too many partially successful resusses that have resulted in significant damage and next to no quality of life for the patients involved. Often the resus attempt is done for the benefit of the relatives in attendance. Resus on TV gives a skewed idea of success rates, unless they have the magic touch on Holby City. If I’m in a coma, I would prefer that, once all reversible causes have been eliminated, no artificial feeding be instituted and that I be allowed to drift away in a haze of opiates.

“I strongly believe that my job as a doctor is to attempt to cure illness, when possible, but [also] to recognise when the time has come to shift emphasis and then ensure that the life my patient has left is as symptom-free and pain-free as possible – following a full and frank discussion with the patient.

“My own father had the foresight to arrange a lasting power of attorney – six weeks before he died, spookily enough. As part of this process we discussed what his wishes were in the event of various scenarios. When his abdominal aortic aneurysm ruptured six weeks later I was able to inform the A&E staff of his wish NOT to be resuscitated and he was kept alive long enough for all his children to be in attendance to say their last goodbyes. I would strongly urge everyone to set this process in motion and have this conversation.”

Pascale Lane, paediatric nephrologist

“I’m only 54 and I hope this doesn’t come up for some time! However, I certainly would not want a lot of the heroics that are offered in current intensive care.

“When I have what will likely be my terminal illness, I don’t want CPR or other measures. If I’m in a coma, I don’t want to be kept alive with feeding tubes or other artificial means. These treatments often prolong dying rather than adding any meaningful period of life.”

Rachel Boyce, GP

“I’m 38, I have a young family, and I’m in good health. If I had a severe and acute illness tomorrow, I’d hope someone would attempt to save me, because there’s a realistic chance of living a useful life. Fast-forward 40 years, it would be a different story. Because of what I’ve seen, I would not want to end up on intensive care unit in my seventies. I would be horrified to be put through what patients are put through. If someone has a massive heart attack on a hospital ward or at home, they are already dead. CPR can bring them back to life, but they don’t sit up and rub their chests saying ‘phew’. They will end up with a tube in their trachea, lines coming out of them. Many who do survive have brain damage. The media has a lot to answer for in terms of public perception of the success of CPR.

“Similarly, if I were diagnosed with cancer, I would think very carefully about whether to go through treatment. If I had something with a good cure rate, bring it on. But if I had, say, an oesophageal or pancreatic tumour, I would think hard before putting myself through any chemo or radiotherapy. These treatments are grim, might buy you a few months, but a lot of the time are futile. I am often staggered at what patients are put through in the hope of buying a few poor quality months of life.

“My grandfather had a massive stroke during heart surgery in his eighties and he ended up in a nursing home for two years, bed-bound, only eating puréed food. Was I glad he survived the operation? Not really. If he’d died from his stroke, we wouldn’t have had a chance to say goodbye, but dear god, he wouldn’t have suffered the way he did. I don’t actually have an advanced directive [aka living will] but I would definitely get one if I were diagnosed with MS or cancer or have a stroke. I would also seriously consider the Dignitas route, if euthanasia is not legalised in this country, but that’s another article…”

Anonymous, pharmaceutical physician

“Doctors have a jaded view of the various end-of-life interventions. This is mainly because we’ve seen how ineffective and brutal they often are. I think every medic will carry with them to the grave the sound/sensation of fracturing a bunch of ribs in an aged chest during a bout of (invariably unsuccessful) CPR. It’s profoundly unpleasant, believe me. CPR really only saves lives when young, healthy people who suffer cardiac arrest out of the blue. If someone is old and unwell then a good outcome is extremely unlikely. I think that’s why most medics I know would be “do not resuscitate” if they were in hospital as an elderly patient.

“It’s a more complex when it comes to interventions like antibiotics, IV fluids, or food. That’s all about quality of life. I generally think docs are a bit more aware that delaying the inevitable is not necessarily a good thing, if that involves prolonging suffering. However, I think people in general are a bit more educated about that too. I get the impression that relatives are a bit more proactive when it comes to discussing end of life plans nowadays. These ‘end-of-life discussions’ are a very hot topic in medicine and a particularly tricky aspect of dealing with elderly or unwell patients.

“If I was fit and had a treatable illness, then they could do whatever they could. With a terminal illness and underlying poor health (e.g. if I’m very elderly) then I would not want any CPR, that’s for damn sure. I would want IV fluids, as dehydration is miserable, and I would like to make a decision about antibiotics on an infection-by-infection basis. I don’t think I would want nasogastric [tube up the nose] feeding, other than on an extremely temporary basis. A life where I can’t chew/savour food is probably not a life worth living.”

This doctor also sent a link to this research into how doctors’ experience affects their end-of-life decisions, and how often they end up doing things for patients which they wouldn’t want done themselves.

Natalie Silvey, trainee anaesthetist

“A commonly heard phrase when discussing what a patient would want when critically unwell is that they would ‘want everything done’. The longer I am a doctor, the more I worry about what that patient or their relatives think ‘everything’ is. I am becoming more and more clear about the things I wouldn’t want done if I should fall unwell suddenly. Which is why talking about death and end-of-life care is so important.

“If I had an acute medical condition that was reversible, then I would agree to most treatments. But I have been clear with my family that I wouldn’t want things like CPR, artificial feeding, or prolonged ventilation if I were to become unwell and if the doctors and others looking after me thought my chances were poor.

“CPR on TV drives me mad. It is completely unrealistic, and having been to many cardiac arrests now you see the reality, and I don’t think I would want that unless there was an easily reversible cause (which there very often isn’t). Of course, some people survive a cardiac arrest and go on to do very well. It isn’t an exact science, but I do know that I don’t want huge heroics unless there is a very good chance of survival. Perhaps it is because of seeing a lot of patients die in different ways and looking after them in a variety of settings; perhaps it is a fear of loss of control. But I do want to make an advance directive and I have spoken to my family about the type of things I would want. For example, I’m very clear that if there was any way I could donate my organs I would definitely want that.

“I just don’t want heroics. I want good pain relief and other symptom control, and not to be alone.”

Anonymous, consultant in emergency medicine

“I would want CPR, with the caveat that it’s a question of how futile it is. If I had a simple cardiac arrest, if my heart stopped but everything else was fine, then yes, I’d probably want it, because I’d have a pretty good predicted outcome. If, however, I’d been unwell for some time, and my kidneys had gone, and my lungs had gone, and because of that my heart stopped, then the chances of a meaningful recovery are much lower. Following a cardiac arrest you’re likely to head to ITU [intensive therapy unit], you’re likely to be there for some time, you’re likely looking at muscle wastage, and possibly pneumonia from the ventilation system.

“It’s about what your chances of having a meaningful life after it would be. It’s not beyond anyone’s understanding, but doctors have more experience of it. I will frequently be in a position of breaking bad news to somebody, or saying so-and-so’s very ill, and you have a discussion: You tell them that if they get so sick that their heart stops, then we might not be able to get them back, or if we do then they’ll be on an ITU for a long time, and they may not get better. When it’s explained in those terms, people who 20 minutes earlier were saying that Granny wants to hang on to life might start saying that, well, if she can’t tend her garden, maybe she wouldn’t. It’s a question of explaining the realities, explaining what it means to get so sick that your heart stops. If an intervention isn’t going to return me to a quality of life which I’d wish for, then I think that’s probably where the line is drawn.

“Regarding assisted suicide: I would feel very frustrated if I were in a position whereby I was incapacitated and didn’t have the option to end my life. It’s an option which everyone has while they’re walking and talking and moving around, but once you’re stuck in a chair, dependent on feeding tubes, that liberty is taken away from you. That’s not to say that we should have free rein and everyone should be rushing off to Dignitas – it must be done with education and discussion and a sense of fairness – but I think those who say it shouldn’t be an option are usually saying it in a position where you still have that option.”

Complete Article HERE!

Jimmy Carter, full of grace

Former president Jimmy Carter
Former president Jimmy Carter

By Margery Eagan

Few Americans would call Jimmy Carter a model president.

But yesterday he offered us a model for facing where we’re all heading: death.

“I’m perfectly at ease with whatever comes,” he told news media yesterday in Atlanta, discussing for 40 minutes, frankly and often even jovially, his terminal cancer diagnosis. “I do have a deep religious faith, which I’m very grateful for.”

Doctors now believe new treatments could prolong his life. But even when he believed he had just a few weeks to live, Carter, 90, said, “I didn’t go into an attitude of much despair or anger or anything like that … I was just completely at ease.”

He called what’s next for him “a new adventure,” and said of his future, “Now I feel that it’s in the hands of God.”

In many ways, Carter’s press conference was typical of one of most extraordinary post-presidential careers ever: gracious, honest, humorous, and humble. Yet Carter, post-presidency, has written almost 30 books, including one on “The Virtues of Aging” and another called “Living Faith.” He spoke yesterday at the Carter Center, the nonprofit he began in 1982 to deal with global democracy and disease. One disease he mentioned is Guinea worm. The center maintains it has helped reduce it from millions of cases in Asia and Africa in the mid-1980s to just 126 cases last year. Not satisfied,  Carter quipped, “I’d like the last Guinea worm to die before I do.”

He has also worked tirelessly for women’s rights and equality. Last month, he said Jesus would support gay marriage. Habitat for Humanity, a nonprofit that builds housing for the poor, has been another central cause. Carter said he hopes to be well enough to travel with the organization Nepal in the fall. Meanwhile, he plans to teach his regular Sunday school class this weekend.

Carter also said that President Obama, former presidents George Bush and Bill Clinton, Vice President Joe Biden, and Secretary of State John Kerry have all called him to wish him well. Then he added, laughing, with characteristic humility, that it was the “first time they’ve called me in a long time.”

The verse from Micah 6:8 comes so quickly to mind about the sum of a great man’s life:

What does the Lord require of you but to do justice, and to love kindness, and to walk humbly with your God?

Complete Article HERE!

Whose Job Is It to Talk to Patients About Death?

In the U.S. health-care system, it’s often unclear who should talk to patients about end-of-life care options. Medicare’s new reimbursement scheme may incentivize doctors to take ownership of those difficult conversations.

talking to a patient about death

By Ricardo Nuila

When Pedro Faust Tzul Menchu, a 45-year-old man with colon cancer, told his oncologist he couldn’t move his leg, a medical alarm bell went off. He’d received chemotherapy a week before, so his other symptoms of vomiting and jaundice weren’t entirely surprising. But the lack of movement in his legs could have been a sign of a spinal-cord compression—when an infection or tumor strangles the nerves running up and down the spine—and potential cord compressions are always treated as an emergency. Pedro was sent straight from the oncology clinic to the hospital, where he was assigned to me as a patient. As Pedro’s hospitalist, the doctor in charge of orchestrating his care, my main job was to figure out if his spinal cord was at risk.

An MRI showed that the cancer had spread to Pedro’s tailbone and throughout his abdomen, but hadn’t damaged his spinal cord. All the specialists I consulted—neurosurgeons, interventional radiologists, more oncologists—recommended a small procedure to protect the collapsed vertebrae so that a future spinal-cord compression might be avoided. When the weekend was over, I handed off Pedro’s care to a partner of mine, another hospitalist, since we typically rotate on Mondays. “They’ll perform the procedure this coming week,” I explained before leaving. Pedro sat up in bed, shook my hand, and thanked me.

Only later did I realize that I never told Pedro how close he now was to dying. His cancer had spread despite two lines of chemotherapy, a previous “debulking” surgery to remove as much of the tumor as possible, and constant surveillance with CT scans. It had nearly claimed the use of his legs. Most likely, it would claim his life within the next six months.

During our first meeting in the hospital’s cancer ward, Pedro confided to me how happy he was to have a doctor who spoke to him in his native Spanish. “It feels so good to be understood,” he said. “Hopefully, with God’s help, you’ll find a way to help me.” We didn’t only talk about his spinal cord. Every time I checked on him, we chatted about his old life in Guatemala.

A couple of times, Pedro arranged it so that his family visited while I made rounds, so I could talk to them all together about the steps that lay ahead. “I’m sorry, but it looks like the cancer has grown,” I told them. I mentioned the upcoming procedures, the possibility of radiation therapy, how the oncologist was considering a third line of chemotherapy, but I admit I never fully connected the dots for them. Telling him what this all meant, how it was almost certain that he would die sooner than he thought, proved too difficult. Like any good doctor, I know how to keep patients focused on the positives—“your family’s all here,” or “it’s good to see you sitting up”—while respecting reality. But something about Pedro, with his calm smile and earnest pleas for my help, made it more difficult than usual to summon up the courage to deliver bad news.

Pedro’s daughter almost seemed to sense my trepidation. She couldn’t have been more than 8 years old, but that didn’t keep her from staring at me with doctor-suspicious eyes, as if I might be the boss of her father’s fate. Whenever she did this, I smiled at her and turned my attention toward Pedro. “Is there anything else I can help you with?”

A couple of days later, I traveled to Chicago to participate in a panel discussion that gathered palliative-care specialists from around the country with patient advocates, ethicists, social workers, and internists (like me), as well as representatives from organizations such as the American Association of Critical-Care Nurses and the Society of Hospital Medicine. The central question: How can we improve end-of-life care in the hospital? While everyone brought a different perspective, what bound us together, caregivers and the bereaved alike, was how much the experience of a hospital death had impacted us—how impersonal it had become, how mechanized, how inhumane. One of the panelists described losing her 36-year-old husband to metastatic colon cancer. Even though she saw a multitude of doctors every day, when her young husband found himself struggling to breathe near the end, none of them dared to discuss the inevitable. “No one told us anything,” she said.

That’s when I thought back to Pedro. By not telling him clearly what the progression of his cancer meant, had I inched him toward a hospitalized death, one that involved shocking his heart if it stopped and pureed food and waking him up every four hours for vital signs? The reason I had been invited to the panel in the first place was an essay I wrote about the difficulty of giving end-of-life care to undocumented patients. I described one patient in particular, a Guatemalan man who did not want to spend his last weeks cycling through the emergency room for pain medications. With the help of the consulate, my colleagues and I arranged to fulfill his dying wish to return to his home country. But the interest and care I’d shown this one patient meant nothing for the next. In not fully explaining Pedro’s prognosis to him, I simply hadn’t done my job.

Or was it my job? Last month, Medicare announced that it would begin to reimburse health-care providers for discussions on end-of-life options, sparking a new debate about who, exactly, should be having those discussions. Whose responsibility is it to clarify how many times a patient wants to be shocked if her heart stops? The critical-care doctor? Who should give the patient a well-informed and plain-spoken prognosis? The oncologist? One of the words that kept coming up in the meeting in Chicago was ownership. In the American medical system, with all its experts, shift work, and moving parts, it can be difficult to place ultimate responsibility for a patient’s care on one individual. That is to say, responsibility is shared—which is how certain duties, like talking with a patient about how close he is to death, can fall through the cracks.

But I can’t help but think that it was I and I alone who failed Pedro. I wasn’t his oncologist, I wasn’t the interventional radiologist, but of all his doctors, I was the one who could best communicate with him. I spoke his language. As it stands right now, there’s no way to guarantee that patients like Pedro receive counseling about different care options (maybe he doesn’t want to go through another round of chemotherapy) or help explaining their end-of-life decisions to family members (maybe he doesn’t want to spend his final days in an ICU).

Under the new Medicare proposal, scheduled to go into effect this fall, any qualified team member—a doctor, a nurse, an assistant—can bill for the time it takes to discuss all the different procedures and interventions that a patient like Pedro might face. Had this been an option during Pedro’s hospitalization, somebody else caring for him might have caught my oversight and talked with me about it, or perhaps held a conversation with Pedro herself and billed for it. Medicare’s reimbursement scheme doesn’t just incentivize holding difficult discussions, it also assigns responsibility. It’s a way of establishing ownership over a difficult conversation.

The day after the Chicago meeting ended—the same day Medicare announced its new plan—I tried finding Pedro in the hospital. I wasn’t scheduled to work, but I thought I might make up for my lack of clear communication by telling him what the new findings really meant. Unfortunately, Pedro was gone. I saw in the chart that the spinal procedure had gone smoothly and that he had actually walked out of the hospital.

A month later, I saw his name outside one of the doors in the cancer unit. Since our last visit, he’d lost weight and endured awfulness, his femur snapping spontaneously as he attempted to walk one morning, so overrun was it by tumor, but somehow Pedro retained his smile and grace. I told him I’d thought so much about our conversations that I wrote an article about him, one I hoped would help doctors think about how they communicate bad news, and he gave me permission to use his name. Fortunately, another of the hospitalists had taken the time to hold the difficult conversation with him. Pedro and his family knew he would soon die, and were preparing for such.

Still, I couldn’t help but feel a professional shame, one I used to feel as a younger doctor when nurses called to remind me of some routine task I had forgotten about, one that made me occasionally punch myself in the thigh and say, “I really need to remember to do that next time.” For Pedro’s sake, I really do.

Complete Article HERE!

Maplewood death shows critical need for end-of-life directive

Paramedics and nursing home workers across Minnesota can relate to the difficult decision that was made.


Gloria Scott, right, signs a “do not resuscitate” order while at the hospice wing of Margaret Tietz Nursing and Rehabilitation Center in the Queens borough of New York on Nov. 26, 2009. At left is her physician, Dr. Lauren Shaiova.

A life-or-death decision by Maplewood paramedics, who stopped life support for an elderly woman at her husband’s insistence, underscores why individuals should have legal documents spelling out the care they want in what can be frantic and confusing end-of-life emergencies, health officials said Wednesday.

Paramedics and nursing home workers across Minnesota can relate to the difficult decision that was made Aug. 7, when medics initially revived 71-year-old Linda Sandhei and started wheeling her to an ambulance, only to have the woman’s husband tell them to stop, according to a police report of the incident. Sandhei died soon after.

Advance directives and do-not-resuscitate (DNR) orders can provide clear guidance for such high-stress decisions. But absent those documents, medics are often asked to trust relatives who are distraught and may not know the wishes of their dying loved ones, said Dr. Jeffrey Ho, medical director for Hennepin County Medical Center’s emergency management services (EMS).

“What we’re trying to avoid is some random person coming up to us and saying, ‘Stop, I don’t want Mabel resuscitated!’ And we ask, ‘Well, who are you?’ and he says, ‘Oh, I’m her son,’ ” Ho said. “We have no way of verifying if that’s true or not, and we really have no way of verifying whether Mabel would actually want to be resuscitated or not.”

Research has shown that patients’ wishes are followed more often when spelled out in advance directives, and that relatives suffer less stress and anxiety. But such documents remain uncommon, even after a coordinated campaign called Honoring Choices by Minnesota’s eight major health care systems to get more people to complete them. The state’s top system had completed directives from just 32 percent of its elderly outpatients, according to a study last year.

Sandhei, who had suffered from Parkinson’s disease for two decades, either hadn’t completed a directive or didn’t have one filed with the Good Samaritan nursing home in Maplewood. She was transferred there in July after being admitted to Regions Hospital, according to a police report.

Her son was at her bedside around 4 p.m. Aug. 7 when she vomited in her sleep and stopped breathing. Sandhei’s husband, Tom, arrived later and stopped the medics from loading his wife in an ambulance for transfer to a hospital. He declined to discuss the incident when reached by phone Wednesday.

Written directives aren’t always the final word in a high-stress situation when someone is dying and relatives are angry or scared. Paramedic Mike Trullinger has tried to follow DNR orders for dying patients only to be threatened by distraught relatives with lawsuits, a baseball bat and, in one rural case, a shotgun pointed at him.

“The patient had a DNR order, but the family member had a shotgun. So we performed CPR anyway,” said Trullinger, now a supervisor for HCMC’s EMS. A sheriff’s deputy eventually arrived and the man put down the weapon and became apologetic, Trullinger said. CPR failed.

Ho said his medics, too, have experienced tough situations even when patients had written documents. Sometimes the document might be improperly dated or lack a doctor’s signature, calling it into question. Other times relatives are scrambling to dig up the document from files while medics are proceeding with CPR.

Frequently, relatives who thought they were prepared to see a loved one die have a change of heart when the moment arrives.

Regardless, Ho said having that paperwork completed resolves more confusion than it creates and leaves people feeling confident in their end-of-life decisions.

“It’s a very difficult decision to be making in a split second with limited information,” he said. “It’s tough to be second-guessed afterward.”

Err on the side of life

The Maplewood Fire Department policy manual instructs medics to follow written orders but otherwise pursue resuscitation: “Until properly completed orders are presented, pre-hospital personnel will assume that no valid DNR orders exist and proceed with standing orders for resuscitation as medically indicated.”

A Hennepin County protocol governing HCMC, North Memorial, Allina, Ridgeview and Edina EMS agencies provides similar advice.

“If we are going to start a resuscitation, we need to do it right then and there,” Ho said. “If the information is not clear to us, then we are erring on the side of starting resuscitation, because we can always stop it later.”

Nursing home workers operate under similar assumptions, said Patti Cullen of Care Providers of Minnesota, a trade group for nursing homes. “From a legal perspective, we advise our members that without the presence of this DNR that is signed, that’s official, they’ve got to do every lifesaving measure, because families will sue if you don’t save a life. They won’t sue if you break ribs because you did CPR.”

The fact that the Maplewood medics halted life support in the absence of a written directive for Sandhei suggested to Ho and Cullen that they had enough information from the relatives or nursing home staff to override the bias toward continuing lifesaving efforts.

Maplewood police made no arrests in the case after an investigation concluded that the medics acted in “good faith.” The term is defined in the state’s advance-directive statute as acting in the best interests of a patient in any way short of assisted suicide.

Six Maplewood firefighters, including the chief, were suspended after a complaint was filed, but city officials declined to confirm whether the complaint was linked to Sandhei.

Cullen sympathized with the relatives and first responders, who she said appeared to act in the best interests of the family and patient.

“You know, the reason for doing that legal document,” she said, “is to get all of the family members on the same page.”

Complete Article HERE!