Doctors slow to have end-of-life conversations

Advance care planning is becoming more popular among patients.

By Kay Manning

[W]hen the concept of paying doctors to help patients plan for end-of-life care first came up as part of health reform, opponents thumped it as a step toward “death panels” and “pulling the plug on grandma.”

Advance care planning was scuttled then, but seven years later, it has been rather quietly incorporated into services reimbursable by Medicare. Patients now can seek guidance from their physicians and other health care professionals about what they want and don’t want in terms of life-sustaining or life-prolonging care and have it included in their medical records.

But codifying what many describe as a sea change in thinking may have come about too quietly. The Centers for Medicare and Medicaid Services, known as CMS, can’t say how many physicians have billed for these conversations since the provision took effect Jan. 1, but a poll released in April showed only about 14 percent of doctors who regularly treat patients over 65 have submitted such bills to Medicare.

While that indicates physicians either don’t know about ACP or are hesitant to engage in such conversations, said Angela Hult, executive director of Oregon-based Cambia Health Foundation, one of three poll sponsors, the public is very solidly in favor.

The California Health Care Foundation, another sponsor, found in a 2012 survey that 80 percent of respondents said it would be important to talk to doctors about their final wishes if they were seriously ill, and 60 percent said it was “extremely important” that their families not be burdened by tough decisions, like stopping nutrition or breathing assistance.

ACP, also called end-of-life directives, is gaining steam among nonprofits, foundations and academic institutions focusing on patient-centered care that also can help health systems be more efficient and save money. Books such as best-seller “Being Mortal” by Massachusetts surgeon Atul Gawande, and “Hope for a Cool Pillow” by Illinois anesthesiologist Margaret Overton use personal experiences to advocate for change in health care of the elderly and raise the profile of what all families eventually face but few typically talk about before a crisis.

Planning ahead instead of guessing what a loved one would want, which can cause emotional rifts in a family even as time is of the essence, serves both patient and caregivers. A 40-year nurse, commenting in a blog post about the absence of ACP wrote: “It has been the cause of severe moral distress among my nurse colleagues in the ICU and the source of many personal nightmares over the years. It is so very frightening to think what we do to the elderly, in particular,” by mustering medical technology to prolong life when that might not be desired.

Physicians even have a term for it — the luge ride, said Michael Preodor, a palliative care doctor at Advocate Lutheran General Hospital in Park Ridge.

“It’s more surgery, more disease intervention, without fixing the problem,” Preodor said. “The key to helping is to align our care with what the patient desires, and that’s dependent upon having these conversations.”

He recently had a patient with a sudden spinal injury and infection that a number of specialists gave opinions on how to treat, overwhelming his wife. She wanted the advice of her trusted family physician and because of the ACP reimbursement, she was able to have several conversations about what to do, deciding on comfort care in hospice, Preodor said.

“I have no doubt he’d be in the ICU, having surgery or other interventions with more and more suffering regardless of the outcome,” Preodor said. “Now there’s time for closure, time with family free of pain, time to deal with dying, which we don’t do very well in this country.”

Gundersen Health System in La Crosse, Wis., has been working more than 20 years to change that. Bud Hammes, an ethicist who started the Respecting Choices program that is cited by many as a model for advance care planning, said more than 96 percent of the 120,000 people in La Crosse County have plans in place before death on how they want to be treated as their health declines. Talking about death is a part of community conversation and happens in clinics, hospices and nursing homes, guided by specially trained personnel, he said.

“Patients have plans that go from very aggressive treatment to comfort care,” Hammes said, eliminating what he called the “terrible dilemma” of families trying to do the right thing but not knowing their loved one’s wishes. “They come to the self-realization of why they need to do this very challenging activity.”

The focus on ACP also has saved Gundersen money. The number of days a patient spent in the hospital in the last two years of life was a national average of 20.3 in 2010, but only 9.7 at Gundersen, according to The Dartmouth Atlas of Health Care, and the total cost of care in those two years was a national average of $79,337, but just $48,771 at Gundersen.

Hammes sees Medicare’s approval of ACP as a “positive step forward that indicates a policy shift from when no one talked about this.” Physicians can bill for 30 minutes of conversation about advance directives with patients, family members or surrogates and be reimbursed $86, which drops to $75 for a second such conversation. CMS has yet to promulgate guidelines for the conversations but has stipulated that while physicians must “meaningfully contribute” to them, other professionals such as RNs and physicians’ assistants can conduct them. And starting in 2017, ACP can be part of an annual Medicare wellness visit.

Ironically, while Hammes supports Medicare’s move to reimbursement and is working with others on ACP training, physicians in the Gundersen system will not seek to be paid for these conversations because of internal billing issues and what they perceive as too little time allowed given the complexities of the issues, he said.

Other possible impediments to full participation by physicians across the country include lack of preparation and clarity on what constitutes an ACP conversation, said Dr. David Longnecker, who co-chairs a committee with the nonprofit National Quality Forum to improve advanced illness care. He suggests simulations, such as are used for training in other parts of medicine, to ease doctors’ discomfort with the topic, community input to adjust for faith and culture concerns, and adoption of ACP by health systems instead of just individual doctors.

“The enemy of good is perfect,” Longnecker said. “We have to start somewhere.

“We don’t want ‘yes, doctor,’ but partnerships (between patient and physician), which are essential to delivering a high quality of care,” he said.

Cambia Health Foundation is building on its poll results with nationwide focus groups “as a deeper dive into what are the barriers to ACP, how do we educate and engage physicians, what tools do they need to have these conversations,” Hult said.

“The conversations are so important for end of life, but also for chronic or life-limiting illnesses. How do we ensure that each person receives what they perceive as quality of life?” she said. “It makes all the difference in approach once you understand the patient is the center of care.”

The Conversation Stopper poll showed 75 percent of 736 physicians surveyed in 50 states believe they are responsible for initiating ACP talks. But if they don’t, a nonprofit, The Conversation Project, offers tips on how patients and family members can broach the subject, decide what they want to accomplish and ensure their plan is followed.

The Conversation Project, co-founded by author Ellen Goodman, implores people not to wait until there’s a crisis.

“It always seems too early … until it’s too late,” say its guidelines, which also suggest: Tell your physician you want to talk about end-of-life wishes. Share any experiences that are shaping your thinking. Ask questions about medical problems, such as ‘what is my life likely to look like six months from now, one year from now, five years from now?’ Probe options for care and how they may affect your independence, and ask what you can expect if you do nothing. Request that your wishes be documented and included in your medical record.

Overton, whose book “Hope for a Cool Pillow” is named after the simple but caring gesture of flipping a pillow for patients, grew up in a family where death and dying were discussed, she said, so she didn’t realize it wasn’t common until she became an anesthesiologist.

“I just want to get people talking, to take the fear out of it,” said Overton, who works at Advocate Lutheran General Hospital. “Having a conversation when you’re not stressed … have a coffee, a lemonade, a glass of wine … those are ideal times.

“Typically, doctors don’t know you as well as your family, your values, what you want. When family is part of the decision or knows what the individual wants, there is an element of empowerment. If people are clear about what they want, it’s hard to override that, and physicians are more likely to get on board,” she said.

Complete Article HERE!

In death reunited: 75 years after Pearl Harbor attack, Anderson brothers of Dilworth, Minn., will rest together in USS Arizona

By Helmut Schmidt


[J]ohn Anderson somehow survived the bloody mayhem of the Dec. 7, 1941, Japanese attack on Pearl Harbor.

But in that attack, Anderson, a crewman on the USS Arizona, lost his twin brother, Jake.

Jake was among 1,177 sailors and Marines from the battleship who died, many of whom were entombed when the ship sank in minutes after a bomb touched off a massive explosion in one of the magazines.

Throughout an active and full life, Anderson carried the guilt of not being able to find his brother.

Now, in death, the brothers from Dilworth, Minn., will be reunited.

Anderson’s cremains, along with those of another man who survived that attack 75 years ago, will be interred by Navy divers in the No. 4 turret of the Arizona on Wednesday, Dec. 7.

Their cremains will join those of about 1,100 sailors and Marines entombed in the wreck.

“When you grow up in the shadow of a hero, you don’t always realize a hero is there,” one of his sons, Terry Anderson, 53, of Roswell, N.M., said Friday, Dec. 2. “We have a great sense of pride.”

Karolyn Anderson, 73, said that it’s been a difficult year since her husband’s death Nov. 14, 2015, at the age of 98.

“This is what John would want. I want to do that for John, and Jake. It’s very sad for me, but I’m honoring his wishes and his memory,” the Roswell woman said of her husband of 47 years.


“For years, John was hesitant to even talk about Jake, He always carried a guilt burden that he couldn’t get Jake. And finally one day, I said ‘John, you never really mention Jake, why is that?’ And he said. ‘I always felt funny that I lived and he didn’t. I always wondered why I was spared and he wasn’t.’ He just felt like he let himself down, and Jake down as well as the rest of the family.”

John and Jake Anderson were born Aug. 26, 1917, in Verona, N.D. Their family later moved to Dilworth, where the twins grew up and graduated from high school.

Both joined the Navy in March 1937.

John Anderson began his Navy career on the USS Saratoga, then transferred to a destroyer. He was in China when it was attacked by the Japanese.

“That left an impact on him. He had pictures of a Chinese refugee column machine gunned by the Japanese. Pretty graphic stuff,” Terry Anderson said.

Pictured from left are the battleships USS West Virginia, USS Tennessee, and the USS Arizona, after the attack by Japanese aircraft on Pearl Harbor, Hawaii, on Dec. 7, 1941. (U.S. Navy photography provided by the Naval Photographic Center)
Pictured from left are the battleships USS West Virginia, USS Tennessee, and the USS Arizona, after the attack by Japanese aircraft on Pearl Harbor, Hawaii, on Dec. 7, 1941.

In 1940, he was transferred to Hawaii and eventually to the Arizona.

John was a member of a crew manning one of the ship’s 14-inch turret guns, and Jake’s station was an anti-aircraft gun. John Anderson also had the duty of setting up chairs for Sunday morning worship services on the Arizona’s deck. After setting up the chairs on Dec. 7, he went below deck to have breakfast when he heard a “kaplunk,” looked out a porthole and saw planes bombing nearby Ford Island, he told columnist Bob Lind of The Forum of Fargo-Moorhead.

“They started hearing machine gun fire and explosions going off, and Dad went to the porthole of the ship out of the mess hall and that’s when he saw the Japanese planes flying by and he saw the orange balls and he knew the Japanese were there, because he had seen them in China,” said another son, John Anderson Jr., 47 of Carlsbad, N.M..

John Anderson said in accounts after the war that he then headed for his post, all the while looking for his brother, Jake. He made it to his gun turret, but before he could help load it, a bomb hit the turret’s top, bounced off and penetrated the deck. The resulting explosion killed many of the crew.

Shortly after, the forward ammunition magazine with 1.5 million pounds of gunpowder blew up, virtually splitting the Arizona, and leaving dead and dying men everywhere, he told Lind.

As the ship began sinking, a senior officer ordered Anderson onto a barge taking wounded men to Ford Island, and they picked up wounded men on the way.

Once on the island, Anderson commandeered another boat to go back to the Arizona with a shipmate, Chester Rose. On the way, they pulled survivors from the harbor, but then the small craft was hit and wrecked, and all but John perished.

“He talked about this guy Rose many many times, about how he lost his life trying to help, go back to the ship. After (many) years, he was able to locate the family and tell the family what happened to Rose,” John Jr. said.

John Anderson was wounded, but swam to land and grabbed a rifle and two bandoliers of ammunition. He then jumped into a bomb blast crater on Ford Island and told Lind that he thought, “Let ’em come!”

In a 2014 article, he told the Stars and Stripes newspaper that the next day a Marine patrol told him survivors of the Arizona were to gather on a nearby dock for a head count.

“Everybody I saw there had rags around their heads,” Anderson said. Bandages covered their arms, skin was scorched and hair was burned off. “Beat up something awful.”

Travis Anderson, 45, of Kurtistown, Hawaii, said his father passed on a very memorable lesson learned on that horrible day.

“I don’t remember what we were doing, but he said there’s a reason for rules and doing things the right way, and I kind of smarted off to him and he told me to listen,” Travis Anderson said. “He told me a story about a man locked up on the Arizona. He was in the brig and no one could find the key. Boy, that just hit me like a ton of bricks. That they were trying to get that guy out of there and they didn’t have the key. Pay attention to what you’re doing and do things right. I carried that with me the rest of my life.”

John Anderson joined the destroyer USS Macdonough, and fought in 13 major battles across the Pacific.

After his discharge in 1945, he worked as a movie stuntman and took night classes in meteorology. A friend later convinced him to join the Navy Reserves, where he served for another 23 years.


While in Hollywood, he met and worked with John Wayne and also worked on the set of the Jimmy Stewart Christmas staple, “It’s a Wonderful Life.”

Anderson moved to Roswell, where he was “Cactus Jack,” a disc jockey playing mostly country music. He met Elvis Presley and Eddie Arnold in that job.

Anderson later became a television meteorologist and a real estate agent.

“He went after it. He lived life to the fullest. It was like reading a Hollywood book. He really lived. I could just go on and on,” Travis Anderson said.

“He was a wonderful man, very charismatic. He was bigger than life,” Karolyn added.

The interment ceremony on the Arizona is unique in that it is the only ship in the U.S. Navy where the cremated remains of a survivor are returned.

“It will be a chance to say goodbye to dad and a chance to reflect on Dec. 7. A day we should never forget,” John Jr. said. “It will be a time … to thank God for all he did.”

Complete Article HERE!

Grief work can be inspiring and rewarding

By Robin Glantz

children and grief

[F]or many of us, grief from the loss of loved ones can be stronger than ever during the holidays. Hospice by the Bay is here to provide support. The need is great, so we are looking for additional professionals to join our bereavement team.

I hope that my story will inspire others.

For the past few years, I’ve been a member of Hospice by the Bay’s bereavement team. I haven’t always done this kind of work; I used to own a bookkeeping company and had also been a human resources director. People often ask me, “What prompted you to make the change?” “How are you able to do such heart-wrenching work?”

Like many who work in hospice, I have experienced profound loss, in particular the death of my father. Losing him was painful but also life-changing. Before, I had been afraid of death and dying — but something “switched” when I was with him while he was dying; I realized that being with someone at this time is a gift.

I can’t say that I handled my grief very well. I moved too fast and was also grieving the “empty nest” after my daughter left for college.

Ultimately, I sought help, and soon realized that it had been a long time since I had been involved in work that came from my heart.

So I went back to school for my graduate degree in psychology with a vague idea to work in the drug treatment field. But one day it came to me, really as a calling: I wanted to do hospice work.

After completing internships in inpatient hospices, I felt a need to round out my work by helping families and individuals who were grieving. I completed Hospice by the Bay’s Bereavement Internship Program and became a licensed marriage and family therapist.

Today, I work with Hospice by the Bay as a community grief counselor, providing crisis and ongoing counseling to individuals and groups as well as grief education to schools, workplaces and organizations in need. All of these services are available to anyone, whether or not their loved one was our patient.

I get a lot out of my work. Rather than becoming depressed or detached (as some might think), it is uplifting. I get to be a “holder of hope” as I meet people at a critical time of their lives — when they are vulnerable, in pain, and may be all alone with their grief.

No matter how emotional the work is, at the end of the day, it is rewarding to know that I am guiding people when they are rudderless and adrift in an ocean of grief. It is an honor. This work has a positive impact on my personal, day-to-day life as well.

I appreciate life more, because I know that it is short. I make more meaningful choices, treasure “the moments,” and experience an expanded capacity for love.

Bereavement work is not for everyone, but it’s a calling for others.

Hospice by the Bay invites qualified candidates to apply for our Bereavement Internship Program. A part-time and yearlong paid program, it offers highly professional training and supervision.

Candidates must have a master’s degree in mental health, counseling, psychology or social work, and be registered as an intern with the Board of Behavioral Sciences.

If you or someone you know is drawn to this type of work, is mature of heart, respectful, and in search of a meaningful placement, please contact Hospice by the Bay at

For the right person, helping others through their grief can be one of the most rewarding experiences you will ever have. It has been for me.

Complete Article HERE!

Psilocybin: A Journey Beyond the Fear of Death?

Johns Hopkins clinical pharmacologist Roland Griffiths talks about a major new study hinting at psychedelic drugs as therapeutic powerhouses

By Richard Schiffman


In one of the largest and most rigorous clinical investigations of psychedelic drugs to date, researchers at Johns Hopkins University and New York University have found that a single dose of psilocybin—the psychoactive compound in “magic” mushrooms—substantially diminished depression and anxiety in patients with advanced cancer.

Psychedelics were the subject of a flurry of serious medical research in the 1960s, when many scientists believed some of the mind-bending compounds held tremendous therapeutic promise for treating a number of conditions including severe mental health problems and alcohol addiction. But flamboyant Harvard psychology professor Timothy Leary—one of the top scientists involved—started aggressively promoting LSD as a consciousness expansion tool for the masses, and the youth counterculture movement answered the call in a big way. Leary lost his job and eventually became an international fugitive. Virtually all legal research on psychedelics shuddered to a halt when federal drug policies hardened in the 1970s.

The decades-long research blackout ended in 1999 when Roland Griffiths of Johns Hopkins was among the first to initiate a new series of studies on psilocybin. Griffiths has been called the grandfather of the current psychedelics research renaissance, and a 21st-century pioneer in the field—but the soft-spoken investigator is no activist or shaman/showman in the mold of Leary. He’s a scientifically cautious clinical pharmacologist and author of more than 300 studies on mood-altering substances from coffee to ketamine.

Much of Griffiths’ fascination with psychedelics stems from his own mindfulness meditation practice, which he says sparked his interest in altered states of consciousness. When he started administering psilocybin to volunteers for his research, he was stunned that more than two-thirds of the participants rated their psychedelic journey one of the most important experiences of their lives.

Griffiths believes that psychedelics are not just tools for exploring the far reaches of the human mind. He says they show remarkable potential for treating conditions ranging from drug and alcohol dependence to depression and post-traumatic stress disorder.

Clinical pharmacologist Roland Griffiths.
Clinical pharmacologist Roland Griffiths.

They may also help relieve one of humanity’s cruelest agonies: the angst that stems from facing the inevitability of death. In research conducted collaboratively by Griffiths and Stephen Ross, clinical director of the NYU Langone Center of Excellence on Addiction, 80 patients with life-threatening cancer in Baltimore and New York City were given laboratory-synthesized psilocybin in a carefully monitored setting, and in conjunction with limited psychological counseling. More than three-quarters reported significant relief from depression and anxiety—improvements that remained during a follow-up survey conducted six months after taking the compound, according to the double-blind study published December 1 in The Journal of Psychopharmacology.

“It is simply unprecedented in psychiatry that a single dose of a medicine produces these kinds of dramatic and enduring results,” Ross says. He and Griffiths acknowledge that psychedelics may never be available on the drugstore shelf. But the scientists do envision a promising future for these substances in controlled clinical use. In a wide-ranging interview, Griffiths told Scientific American about the cancer study and his other work with psychedelics—a field that he says could eventually contribute to helping ensure our survival as a species.

[An edited transcript of the interview follows.]

What were your concerns going into the cancer study?
The volunteers came to us often highly stressed and demoralized by their illness and the often-grueling medical treatment. I felt very cautious at first, wondering if this might not re-wound people dealing with the painful questions of death and dying. How do we know that this kind of experience with this disorienting compound wouldn’t exacerbate that? It turns out that it doesn’t. It does just the opposite. The experience appears to be deeply meaningful spiritually and personally, and very healing in the context of people’s understanding of their illness and how they manage that going forward.

Could you describe your procedure?
We spent at least eight hours talking to people about their cancer, their anxiety, their concerns and so on to develop good rapport with them before the trial. During the sessions there was no specific psychological intervention—we were just inviting people to lie on the couch and explore their own inner experience.

What did your research subjects tell you about that experience?
There is something about the core of this experience that opens people up to the great mystery of what it is that we don’t know. It is not that everybody comes out of it and says, ‘Oh, now I believe in life after death.’ That needn’t be the case at all. But the psilocybin experience enables a sense of deeper meaning, and an understanding that in the largest frame everything is fine and that there is nothing to be fearful of. There is a buoyancy that comes of that which is quite remarkable. To see people who are so beaten down by this illness, and they start actually providing reassurance to the people who love them most, telling them ‘it is all okay and there is no need to worry’— when a dying person can provide that type of clarity for their caretakers, even we researchers are left with a sense of wonder.

Was this positive result universal?
We found that the response was dose-specific. The larger dose created a much larger response than the lower dose. We also found that the occurrence of mystical-type experiences is positively correlated with positive outcomes: Those who underwent them were more likely to have enduring, large-magnitude changes in depression and anxiety.

Did any of your volunteers experience difficulties?
There are potential risks associated with these compounds. We can protect against a lot of those risks, it seems, through the screening and preparation procedure in our medical setting. About 30 percent of our people reported some fear or discomfort arising sometime during the experience. If individuals are anxious, then we might say a few words, or hold their hand. It is really just grounding them in consensual reality, reminding them that they have taken psilocybin, that everything is going to be alright. Very often these short-lived experiences of psychological challenge can be cathartic and serve as doorways into personal meaning and transcendence—but not always.

Where do you go from here?
The Heffter Research Institute, which funded our study, has just opened a dialogue with the FDA (Food and Drug Administration) about initiating a phase 3 investigation. A phase 3 clinical trial is the gold standard for determining whether something is clinically efficacious and meets the standards that are necessary for it to be released as a pharmaceutical. Approval would be under very narrow and restrictive conditions initially. The drug might be controlled by a central pharmacy, which sends it to clinics that are authorized to administer psilocybin in this therapeutic context. So this is not writing a prescription and taking it home. The analogy would be more like an anesthetic being dispensed and managed by an anesthesiologist.

You are also currently conducting research on psilocybin and smoking.
We are using psilocybin in conjunction with cognitive behavioral therapy with cigarette smokers to see if these deeply meaningful experiences that can happen with psilocybin can be linked with the intention and commitment to quit smoking, among people who have failed repeatedly to do so. Earlier we ran an uncontrolled pilot study on that in 50 volunteers, in which we had 80 percent abstinence rates at six months. Now we are doing a controlled clinical trial in that population.

How do you account for your remarkable initial results?
People who have taken psilocybin appear to have more confidence in their ability to change their own behavior and to manage their addictions. Prior to this experience, quite often the individual feels that they have no freedom relative to their addiction, that they are hooked and they don’t have the capacity to change. But after an experience of this sort—which is like backing up and seeing the larger picture—they begin to ask themselves ‘Why would I think that I couldn’t stop cigarette smoking? Why would I think that this craving is so compelling that I have to give in to it?’ When the psilocybin is coupled with cognitive behavioral therapy, which is giving smokers tools and a framework to work on this, it appears to be very helpful.

You are also working with meditation practitioners. Are they having similar experiences?
We have done an unpublished study with beginning meditators. We found that psilocybin potentiates their engagement with their spiritual practice, and it appears to boost dispositional characteristics like gratitude, compassion, altruism, sensitivity to others and forgiveness. We were interested in whether the psilocybin used in conjunction with meditation could create sustained changes in people that were of social value. And that appears to be the case.

So it is actually changing personality?
Yes. That is really interesting because personality is considered to be a fixed characteristic; it is generally thought to be locked down in an individual by their early twenties. And yet here we are seeing significant increases in their “openness” and other pro-social dimensions of personality, which are also correlated with creativity, so this is truly surprising.

Do we know what is actually happening in the brain?
We are doing neuro-imaging studies. Dr. Robin Carhart-Harris’s group at Imperial College in London is also doing neuro-imaging studies. So it is an area of very active investigation. The effects are perhaps explained, at least initially, by changes in something [in the brain] called “the default mode network,” which is involved in self-referential processing [and in sustaining our sense of ego]. It turns out that this network is hyperactive in depression. Interestingly, in meditation it becomes quiescent, and also with psilocybin it becomes quiescent. This may correlate with the experience of clarity of coming into the present moment.

That is perhaps an explanation of the acute effects, but the enduring effects are much less clear, and I don’t think that we have a good handle on that at all. Undoubtedly it is going to be much more complex than just the default mode network, because of the vast interconnectedness of brain function.

What are the practical implications of this kind of neurological and therapeutic knowledge of psychedelics?
Ultimately it is not really about psychedelics. Science is going to take it beyond psychedelics when we start understanding the brain mechanisms underlying this and begin harnessing these for the benefit of humankind.

The core mystical experience is one of the interconnectedness of all people and things, the awareness that we are all in this together. It is precisely the lack of this sense of mutual caretaking that puts our species at risk right now, with climate change and the development of weaponry that can destroy life on the planet. So the answer is not that everybody needs to take psychedelics. It is to understand what mechanisms maximize these kinds of experiences, and to learn how to harness them so that we don’t end up annihilating ourselves.

Complete Article HERE!

What matters most at the end of life?

By Rabbi Bonnie Koppell


On July 14, 2014, my husband David and I sat down with our children to disseminate and discuss our health care advanced directives. It was David’s 69th birthday; he died about 2 months before his 70th.

David had endured several years of ill health, culminating in the removal of a kidney. In June, the month prior, we learned that the cancer had metastasized to his bones.  As a couple, we wanted to make sure that all of the children understood our desires for end-of-life care. Thankfully we had had the foresight to discuss a broad variety of medical treatment options dispassionately, years before there was any urgent medical necessity.  Suddenly those decisions became radically more real.

For 10 months, David endured two different rounds of chemotherapy, neither of which had the desired effect of stopping the cancer that was destroying his bones and causing unimaginable pain. He persevered through the agony of trying to move while his bones were crumbling. Radiation impacted his ability to swallow and to enjoy food, which became a non-option when he had a feeding tube inserted. We watched him fight and waste away, fight and waste away, yet always with the hope that one more treatment would be successful where others had failed.

We had talked about nutrition and hydration at the end of life, about ventilators and surgical intervention in the face of terminal illness, but we had not addressed the fundamental question that The Conversation Project urges us to consider: “What matters to you most at the end of life?”

Dr. Atul Gawande, author of “Being Mortal: Medicine and What Matters in the End” and a leading thinker about the role of the medical profession in caring for patients whose time is limited, reminds us that people have a broad variety of concerns besides prolonging their lives.

Doctors are trained to view death as the enemy and to battle on until the end.  At some point, the battle was lost. Among David’s final words were, “Why didn’t he (the doctor) tell me it was so bad?”

Gawande writes that, while there is nothing wrong with sustaining hope, it is problematic if it prevents us from preparing for the more likely outcome.

He writes, “We’ve created a multimillion-dollar edifice for dispensing the medical equivalent of lottery tickets – and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.”

The Conversation Project is an important first step in considering what we each might value most if we have the luxury of knowing that our time is limited. What would be a good enough day to want to go on, and what is the tipping point where we would be ready to let go? The answer will be different for each of us, and we must have the conversation now.

David felt loved until the very end; he enjoyed the best possible support from friends, family and community. And, I wish that we had had more time to lay down our swords, to cease the raging battle, and to have quietly enjoyed more the time with which we were blessed.

Our culture is changing and growing and learning. The Deutsch Family Shalom Center at Temple Chai recently hosted more than 100 individuals who courageously undertook the first steps to have “the conversation.”

At 10:30 a.m. on Sunday, Jan. 8, we will gather to share our experiences and address other concerns as we move forward in these challenging and uncharted waters. Attendance at the first gathering is not required.

What a gift to our family and loved ones to ensure that our financial affairs are in order, our burial arrangements are understood, and to have articulated our answer to that question, “What matters to me at the end of life is…”

Complete Article HERE!

Ancient Americans Mutilated Corpses in Funeral Rituals

By Tia Ghose

A skull exhumed from the Lapa do Santo cave in Brazil shows evidence of modification such as tooth removal. Hundreds of remains from the site show that beginning around 10,000 years ago, ancient inhabitants used an elaborate set of rituals surrounding death.
A skull exhumed from the Lapa do Santo cave in Brazil shows evidence of modification such as tooth removal. Hundreds of remains from the site show that beginning around 10,000 years ago, ancient inhabitants used an elaborate set of rituals surrounding death.

Ancient people ripped out teeth, stuffed broken bones into human skulls and de-fleshed corpses as part of elaborate funeral rituals in South America, an archaeological discovery has revealed.

The site of Lapa do Santo in Brazil holds a trove of human remains that were modified elaborately by the earliest inhabitants of the continent starting around 10,000 years ago, the new study shows. The finds change the picture of this culture’s sophistication, said study author André Strauss, a researcher at the Max Planck Institute for Evolutionary Anthropology in Leipzig, Germany.

“In reconstructing the life of past populations, human burials are highly informative of symbolic and ritual behavior,” Strauss said in a statement. “In this frame, the funerary record presented in this study highlights that the human groups inhabiting east South America at 10,000 years ago were more diverse and sophisticated than previously thought.” [See Images of the Mutilated Skeletons at Lapa do Santo]

The site of Lapa do Santo, a cave nestled deep in the rainforest of central-eastern Brazil, shows evidence of human occupation dating back almost 12,000 years. Archaeologists have found a trove of human remains, tools, leftovers from past meals and even etchings of a horny man with a giant phallus in the 14,000-square-foot (1,300 square meters) cave. The huge limestone cavern is also in the same region where archaeologists discovered Luzia, one of the oldest known human skeletons from the New World, Live Science previously reported.

In the 19th century, naturalist Peter Lund first set foot in the region, which harbors some of the oldest skeletons in South America. But although archaeologists have stumbled upon hundreds of skeletons since then, few had noticed one strange feature: Many of the bodies had been modified after death.

In their recent archaeological excavations, Strauss and his colleagues took a more careful look at some of the remains found at Lapa do Santo. They found that starting between 10,600 and 10,400 years ago, the ancient inhabitants of the region buried their dead as complete skeletons.

But 1,000 years later (between about 9,600 and 9,400 years ago), people began dismembering, mutilating and de-fleshing fresh corpses before burying them. The teeth from the skulls were pulled out systematically. Some bones showed evidence of having been burned or cannibalized before being placed inside another skull, the researchers reported in the December issue of the journal Antiquity.

“The strong emphasis on the reduction of fresh corpses explains why these fascinating mortuary practices were not recognized during almost two centuries of research in the region,” Strauss said.

The team has not uncovered any other forms of memorial, such as gravestones or grave goods. Instead, the researchers said, it seems that this strict process of dismemberment and corpse mutilation was one of the central rituals used by these ancient people in commemorating the dead.

Complete Article HERE!

Fighting for a good death

By The BBC


[M]alawi is one of the world’s least developed countries with very primitive health care. In March 1998, nurse Lucy Finch had visited her native Malawi to care for her sister who was dying of Aids, when hearing a young man’s agonising death made her decide to come back and set up Malawi’s first and only hospice.

In my view, the key ingredients for a “good death” are probably the same all over the world, in all cultures. The first is to know that you are about to die, not to have it hidden from you, and the second is to be kept, as far as possible, pain-free but alert.

This will give you the chance to prepare yourself, and those you care about, and thus approach your death with some equanimity. It is also preferable to be at home, and with close loved ones. This is your death, no-one else’s, and you want to handle it your own way.

In sub-Saharan Africa, although all of the above would be desired, the access to a pain-free death is highly unlikely unless you are near to a centre like ours at Ndi Moyo.

Local hospitals are extremely under-resourced
Local hospitals are extremely under-resourced

My own commitment to bringing the possibility of a pain-free death to my native Malawi began one night when I was spending time with my sister who was in hospital.

In the next room, a young soldier was dying in terrible agony because no-one had the drugs necessary to relieve his excruciating pain. I will never forget listening to his harrowing screams, as, all alone, he faced both suffering of such intensity it was tearing his very being apart, and the terror of the unknown journey into death ahead of him.

That poor young man, though he never knew it, changed my life and indeed the lives of the many others who were to be helped by the palliative care I determined that night to introduce.


The scourge of the HIV/Aids pandemic which swept sub-Saharan Africa in the 1980s like a biblical pestilence made more urgent than ever the need to assist people to a pain-free death.

The aggressive cancers associated with HIV did not carry off the elderly, but the sexually active age groups – the young and middle-aged. Unless palliative care could be introduced, the chances of a “good death”, pain-free but alert, were minimal. And that is how we started.

Unlike hospices in the West, we operate what we call “hospice at home”, and at our out-patients facility. Generally speaking, patients in Africa want to be with their families and close to their ancestors at this time of life. The caring atmosphere is generally missing within hospitals in Malawi because they are so under-resourced – for example, you need to take a relative with you, otherwise there would be no-one to give you a wash or feed you.

 Providing palliative care at home means patients can remain in their community
Providing palliative care at home means patients can remain in their community

It is important that palliative care starts at the point of diagnosis, not just as death becomes imminent. This provides an opportunity for the patient to deal with their fears about the future of those they leave behind, as well as fears for themselves.

These fears are entirely understandable because Malawi only has two oncologists for a population of nearly 17 million, and has no dedicated cancer centre. The available chemotherapy is largely palliative rather than curative.

There is also lack of early diagnosis so by the time the patients come to us the cancer is already advanced and for them the only option is palliative care.

Some 50% of people in Africa do not see a health worker their entire lives. They may use herbal medicines and traditional healers which are cheaper than Western-trained health workers. For example, in Uganda there is one traditional healer to 450 people and one doctor to 20,000.

Jonathan was suffering from oesophageal cancer and HIV. The bottles contain morphine which is an affordable way for patients to manage their pain at home.
Jonathan was suffering from esophageal cancer and HIV. The bottles contain morphine which is an affordable way for patients to manage their pain at home.
His family wait outside his hut
His family wait outside his hut

Our care is holistic, which means that our trained staff multi-task in the relief of social, psychological and spiritual pain, as well as physical, whereas in the West different professionals would deal with different aspects of care. We know that unless we deal with these other aspects of pain – the social, the psychological and the spiritual – the physical pain cannot be managed.

Ndi Moyo grows herbs as an affordable way to help their patients:

  • Lemon grass helps patients excrete toxins
  • Aloe is a good balm for wounds and acts as a useful laxative
  • Artemisia has powerful immunity-boosting properties
  • Papaya sap is useful as an antiseptic
  • Vinca rosa lowers the white blood cell count

Source: Ndi Moyo

Holistic and extended care offers the terminally ill the time to make peace with any with whom they have been in conflict, the chance to forgive and be forgiven, the chance to renew love and be loved.

I feel that sometimes in the West it is easier for a doctor to suggest another treatment to a patient rather than to have the more difficult conversation about whether it may be better not to continue to treat a serious illness, partly because expectations in the West are higher.

Holistic palliative care as practised here is not about adding days to life, but adding life to the days that remain.

Complete Article HERE!