Research shows psilocybin — a Schedule I narcotic — to be of great help to patients with end-of-life problems


Guided LSD session at Johns Hopkins University.

“People in this country don’t talk about death. When I would talk about it sometimes with people they would say, ‘Oh be optimistic! Don’t talk that way. You’re gonna be fine.’ You really need to look at it (death) and this is the perfect way to do it.”
Ann Levy – psilocybin-assisted psychotherapy study participant

I remember the ride home being really quiet. Typically, my mom would be driving me nuts, loudly singing old Methodist hymns, rather than letting us listen to music on the radio. But this time she just drove silently as my grandmother, Lillian Brustad, stared out the window of our well-traveled station wagon. We had just left my grandmother’s oncology appointment in Rochester, New York and we were heading back to her home in Hamilton. There was no discussion about the appointment, no talk about any diagnosis, no ‘next steps’ and no ‘why me’s?’ What was said was said in a meeting with my mother, my grandmother and her doctors.

I’d break the silence with my repetitive pre-teen complaints as to why we should have stopped in Rochester, rather than waiting until Syracuse to pull into a Friendly’s restaurant for a Jim Dandy sundae. I’d debate from the back seat that stopping in Rochester would have made me full and happy. Stopping would have better allowed me to finish this book report on Mickey Mantle that I was putting off.

When I wasn’t complaining; there was silence…

We made many more trips to Rochester over the next few years. My grandmother remained stoic in her battle against cancer, despite it wreaking havoc on her physical body, eventually taking her life.

The final months of life are often marked by increasing physical and emotional suffering. As one approaches death, we often experience varying degrees of depression, hopelessness, anxiety, and a desire to hasten death. The prospect of our loved one’s looming death can lead to feelings of defeat, helplessness, and despair in family members and within the patient’s medical team.

How do you want to die? Most people hope to die at home, with their loved ones, but sadly an overwhelming majority of us die in a hospital or extended care home surrounded by beeping equipment.

What would a good death look like? Anthony Bocelli, PhD, is a palliative care psychologist and investigator in a study conducted at the NYU School of Medicine on the use of psilocybin-assisted psychotherapy to help patients and families deal better with end-of-life distress.

“Death needs to be humanized,” he says. “Although the end-of-life can be profoundly difficult, it can also trigger a search for meaning and an openness for the sacred.”

Maria Sabina called psilocybin mushrooms her ‘saint children.’ Sabina was the Mazatec curandera/healer that banker Gordon Wasson sought out to learn the secrets of ‘magic mushrooms.’ Sabina introduced Wasson and his wife Valentina to teonanácatl; the Psilocybe mushroom. ‘nti-ši-tho in Mazatec, meaning the ‘Little-One-Who-Springs-Forth’.

Wasson went on to famously detail his psychedelic experience in Life Magazine, introducing these sacred mushrooms to the Western world. Albert Hofmann, discoverer of LSD and chemist at the Swiss Sandoz Laboratories, isolated psilocybin in 1957 from mushrooms collected by Wasson’s team on their second trip to Oaxaca.

These sacred mushrooms have been used for millennia by indigenous cultures around the globe for healing and insight. Psilocybin-assisted psychotherapy melds this ancient sacred wisdom with modern day scientific technology. I am not talking here about eating a bag of ‘shrooms and tripping at a rock concert; this is about the therapeutic use of this valuable tool in a controlled setting under supervision by trained guides to help combat depression, addiction, and existential distress.

So why psilocybin mushrooms and why now? It has been said that psychedelics could be to psychiatry, what the microscope is to biology or the telescope was to astronomy. Bear in mind that telescopic science was prohibited in 1616 for over 100 years, in fear that people may discover that planet Earth was not the center of the universe.

Alicia Danforth, Ph.D, served as investigator on a psychedelic research study at Harbor-UCLA Medical Center examining the safety and efficacy of psilocybin as a treatment for advanced-cancer anxiety. She remarked, “It’s very important not to lose sight of the fact that research with psychedelic medicines has been going on for thousands and thousands of years. As long as there has been humans really. What’s new is when you get into the Western medical model.”

Dr. Danforth worked with Dr. Charles Grob on an important pilot study at Harbor-UCLA Medical Center on 12 patients who were facing end-of-life from advanced stages of cancer. Subjects were administered a placebo (niacin) during one session and the other session they received psilocybin.

I had the pleasure of discussing the study and their findings with Dr. Danforth. “Our participants were really near death. Some did not survive the six-month follow-up period,” she said.

Dr. Danforth detailed that they administered “one session at a low-to-moderate dose because we were the first cancer-treatment study in a new wave of psychedelic-assisted therapy and the FDA was really conservative. The main purpose for these little pilot studies is to establish that they are safe and is it even achievable. Does it work?”

The other studies that I will cite in this article worked with higher doses of psilocybin. However, Danforth stated that, ‘even with one session of preparatory psychotherapy session before (treatment day), then a really supported session on the day of treatment, then therapy afterwards, our study found a reduction in anxiety and a trend toward a reduction in depression.” She continued, “It’s more important to look at the trending that leads to larger studies so you can make stronger claims. We saw positive trends and there was a significant difference in the anxiety scores. The qualitative outcomes were good; the safety data were good. We didn’t have any serious adverse events and everything was green light go for the larger studies.”

As Danforth mentioned, humans have been conducting research for thousands of years on psychedelics. Prior to prohibition of these substances in the late sixties, there were more than a thousand studies conducted with more than 40,000 subjects and many showed positive trends.

During the 1960’s, Dr. Eric Kast, from the Chicago Medical School utilized LSD for a series of studies working with cancer patients encountering death. Several hundred advanced-stage cancer patients were administered LSD. Findings showed trends toward pain reduction for several weeks, relief of depression, improved sleep, and a lessened fear of death. Dr. Kast noted that some of these individuals showed a striking disregard for the gravity of their personal situations. They frequently talked about their impending death with an emotional attitude that would be considered atypical in our culture.

Another important study by William Pahnke from the Maryland Psychiatric Research Center, in Baltimore conducted a study that was published in the Harvard Theological Review in 1969. His work examined the psychedelic mystical experience in the human encounter with death. He found, “The most dramatic effects came in the wake of a mystical experience.” He reported a decrease in fear, anxiety, worry and depression. Often the need for pain medications was lessened, because the patient was able to tolerate pain more easily. There was a profound increase in serenity, peace, and calmness, with a marked decrease in the fear of death.

Roland Griffiths, Ph.D., is a Professor in the Departments of Psychiatry and Neurosciences at the Johns Hopkins University School of Medicine. He is the principal investigator of the Johns Hopkins Psilocybin Project. He and his team have been studying the effects of psilocybin and its ability to bring about mystical experiences. Their team conducted the largest and most rigorous study in this new wave of psychedelic research involving fifty-one patients who had received a potentially life-threatening cancer diagnosis.

“We found that the response was dose-specific,” Dr. Griffiths said. “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.”

The Johns Hopkins group reported that psilocybin decreased both clinician and patient-rated depressed mood, anxiety, and death anxiety. The results showed increased quality of life, sense of connectedness, and optimism. Participants expressed an increased belief that death is not an ending, but rather a transition to something even greater than this life. About 70% reported the experience as one of their top five spiritually significant lifetime events, including the birth of a child or death of a loved one.”

He continued, “There are potential risks associated with these compounds. We can protect against a lot of those risks 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.”

Dr Charles Grob, the principal investigator on the UCLA study reported similar results, “Psilocybin facilitates a greater likelihood of achieving a psycho-spiritual state of consciousness — a mystical kind of experience. The old research literature from the 50’s and 60’s very strongly indicated that individuals in psychedelic research studies, who experienced a spiritual epiphany during the course of their many hour treatment sessions, were more likely to have a long-term positive therapeutic outcome.”

Why does psilocybin appear to efficacious, while modern pharmaceutical efforts are largely ineffective?

Dr. Griffiths explains, “Psilocybin acts very selectively at serotonin-2A receptors, which are a neurotransmitter that promotes positive feelings. Acting like a ‘lock and key’, so psilocybin can click in to this receptor site and activate a variety of processes.” With all of the classical psychedelics; LSD, psilocybin, mescaline; the thing that they have in common is that they activate serotonin-2A receptors.

Dr. Danforth added, “Sometimes when we are in a challenging situation in life, our thoughts can get stuck in a loop. Negative thoughts just continue and continue and continue and psilocybin in a therapeutic setting can function like a big hand coming in and jiggling the needle on a skipping record, so that a tune can resume.”

Yet another study — this one conducted by NYU Langone Psilocybin Research Project — examined the effects of psilocybin on the psychosocial distress with patients with advanced cancer. This trial was led by Stephen Ross, M.D. and Anthony Bossis, Ph.D. Their study included 29 patients facing end-of-life. In their sessions, subjects were either given either a moderate dose of psilocybin or a placebo (niacin), cross-switching to the other after about seven weeks after the first session. Findings were very similar to the studies at UCLA and Johns Hopkins. They found that psilocybin produced immediate, substantial, and sustained improvements in anxiety and depression leading to decreases in cancer-related demoralization and hopelessness, improved spiritual well being, and an increased quality of life. At the six-month follow-up, psilocybin was associated with enduring anxiolytic and antidepressant effects.

The NYU researchers further reported sustained benefits in existential distress and quality of life, as well as improved attitudes towards death.

There is growing anticipation that psilocybin could be rescheduled and open up further opportunities for psychedelic research. Decriminalization of psilocybin is going to the voters in the city of Denver on May 7.

“I look forward to a day, that if it were clinically indicated to be able to offer that service to certain clients,” Dr. Danforth said. “Expanded access is not available yet; no one in the United States is able to legally work with Schedule I substances in a clinical setting,”

She continued, “It’s possible in the near future that some in the MDMA (ecstasy) world we will have expanded access for PTSD therapy. It’s hard to anticipate what’s going to happen with MDMA and psilocybin, but I don’t think it’s going to happen overnight. Everybody’s kind of waiting to see what happens in Denver and what that’ll mean… There are a ton of opportunists rushing in trying to make a buck, but in terms of real clinical work, that process moves at a snail’s pace, as it should.”

I asked Dr. Danforth on additional prospects for psychedelic-assisted psychotherapy. “My private practice is almost exclusively adults on the autism spectrum and some of them have very severe social anxiety and MDMA would be a real powerful clinical tool.”

She continued, “Others are very interested at looking at psychedelics for the betterment of well people. Two streams of effort working here — treating people that are unwell or providing guidance for those that are well, like we have been doing for thousands of years. They may have spiritual reasons for altering consciousness. It’s not all about getting a competitive edge in Silicon Valley, but it’s about how do we make our community healthy. For me it just happens to be the healing aspect. For people that are really suffering is where my interests lie.”

So what are the most promising areas in psilocybin research?

“Two of the most promising areas are Palliative Care; reducing the stress near the end of life and addiction studies,” Danforth replied. “I’ve always been really fascinated with the smoking cessation studies at John Hopkins and with Michael Bogenschutz M.D. (NYU) studies on alcoholism. I think that was one of the most promising areas of study from the first wave of psychedelic research in the sixties. I’d like to see more funding and research around treating addiction.”

Danforth said it’s frustrating not being able to use all the tools she’d like when treating patients. “I feel a bit like a firefighter who’s still allowed to fight fires, but I just can’t bring my hose,” she said. “The answer isn’t, ‘well let’s just give everybody fire hoses,’ because a lot of people could be hurt in an uncontrolled setting. I hope that we can find a middle ground.”

Dr. Danforth advises, “Psilocybin was used as a sacrament for sacred rituals, with a lot of reverence, wisdom, tradition, and mentoring. I’m not sure we are grown up enough as a culture to just have widespread access.”

Dr Danforth’s associate on the UCLA study, Gurpreet S. Chopra, emphasized, “I think it’s kind of ridiculous to be a scientist and a doctor and not investigate and try to understand how we can use these tools in a Western Culture safely.”

I posed a similar thought to local clinical psychologist and founder of the Alaska Psilocybin Society, Dr. William Kerst. Dr. Kerst finds that psilocybin being a Schedule I substance to be ridiculous. “It clearly has potential medical benefit as demonstrated by the studies that are ongoing and not only is it not necessarily addictive, but it tends to be anti-addictive.”

“Working with the Alaska Psychedelic Society, I have had several patients that are struggling with end-of-life anxiety, which is one of the primary uses of psilocybin in some of these studies and they don’t have time for legalization efforts to get pushed through. They need relief and it looks like these substances may be able to do that, and right now we have to say, ‘no’ to these patients and that’s terrible. It’s heart-wrenching, honestly.”

Should you have further interest in investigating psychedelic substances, the Alaska Psychedelic Society is holding their monthly meeting on Saturday, April 27 from 2 to 4 pm at Uncle Leroy’s Coffee, located at 701 West 36th Avenue in Anchorage. Also visit the Society’s Facebook page to keep updated on future meetings as well as recent studies and articles regarding psychedelics.

Complete Article HERE!

‘Natural death may not be kind, easy or peaceful for pets’

Cruel to be kind: animal hospice gives pets better way to die

To help pet owners make decisions about end-of-life care, Villalobos developed a decision tool based on seven indicators. The scale is often called the HHHHHMM scale.

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Nearly 14 years ago, my daughter and I were grieving the death of my mother, and it seemed nothing could lift our spirits. Then we got Fluffy, a bouncing bundle of gray and white puppy, and everything changed.

Fluffy kept us busy with pee pads and squeaky toys. She made us laugh in spite of our sadness, and the gray clouds of grief began to recede

Over the years, our 10lb fluff ball was a constant in our lives. We dressed her up in holiday sweaters, celebrated her birthdays and scolded her for sneaking food from the cat’s dish. But in recent weeks, as our walks slowed down and her naps grew longer, it became clear that our time together was limited. I hoped that in the end, Fluffy would have a natural death, drifting off to sleep for good on her favorite pillow

A natural death is what many of us hope for with our pets. They are members of our family, deeply enmeshed in our lives, and for many of us, thoughts of euthanasia seem unfathomable, so we cling to the notion that a natural death is desirable.

In most cases, a natural death, she said, means prolonged suffering

But my veterinarian said that my end-of-life scenario for my dog wasn’t realistic. In most cases, a natural death, she said, means prolonged suffering that we don’t always see, because dogs and cats are far more stoic than humans when it comes to pain.

Dr Alice Villalobos, an oncology veterinarian in California, said that many pet owners idealise a natural death without thinking about what a “natural” death really means. A frail animal, she noted, doesn’t linger very long in nature. “When animals were domesticated, they gave up that freedom to go under a bush and wait to die,” Villalobos said. “They become very quickly part of mother nature’s plan due to predators or the elements. And yet in our homes we protect them from everything so they can live a long time – and sometimes too long.”

I had reached out to two at-home vet services that both offered compassionate guidance and confirmed my fears that no treatments were available to improve her condition

Villalobos has dedicated her career to helping pet owners navigate end-of-life issues. She created an animal hospice program she calls “pawspice.” She coined the name because she doesn’t want to confuse end-of-life care for animals with the choices we make for human hospice.

Her program is focused on extending a pet’s quality of life. That might mean treating a cancer “in kind and gentle ways,” she said. It can mean supportive care like giving fluids, oxygen or pain medication. In some cases, it might mean hand-feeding for frail pets or carrying an animal to a water dish or litter box. And finally, she said, it means a “well death.”

Villalobos has advocated what she calls “bond-centered euthanasia,” which allows the pet owner to be present and play a comforting role during the procedure. She has also championed sedation-first euthanasia, putting the animal into a gentle sleep before administering a lethal drug.

To help pet owners make decisions about end-of-life care, Villalobos developed a decision tool based on seven indicators. The scale is often called the HHHHHMM scale, based on the first letter of each indicator. On a scale of zero to 10, with zero being very poor and 10 being best, a pet owner is asked to rate the following:

HURT Is the pet’s pain successfully managed? Is it breathing with ease or distress?
HUNGER Is the pet eating enough? Does hand-feeding help?
HYDRATION Is the patient dehydrated?
HYGIENE Is the pet able to stay clean? Is it suffering from bed sores?
HAPPINESS Does the pet express joy and interest?
MOBILITY Can the patient get up without assistance? Is it stumbling?
MORE Does your pet have more good days than bad? Is a healthy human-animal bond still possible?

Villalobos said pet owners should talk to their vet about the ways they can improve a pet’s life in each category. When pet owners approach end of life this way, they are often surprised at how much they can do to improve a pet’s quality of life, she said.

By revisiting the scale frequently, pet owners can better assess the quality of the pet’s hospice care and gauge an animal’s decline. The goal should be to keep the total at 35 or higher. And as the numbers begin to decline below 35, the scale can be used to help a pet owner make a final decision about euthanasia.

“Natural death, as much as many people wish it would happen, may not be kind and may not be easy and may not be peaceful,” Villalobos said. “Most people would prefer to assure a peaceful passing. You’re just helping the pet separate from the pack just as he would have done in nature.”

Complete Article HERE!

Hospice Care & Palliative Care – When to use Them

Hospice a word that is synonymous with “end of life” care. Palliative – a little more confusing and often confused with ‘end of life’. The two are very different therapies but Palliative Care is an offshoot of Hospice.

by Petr Horcik

Hospice is a service for patients who are terminally ill and have decided not to take any more medication that might “cure” them (i.e. chemotherapy for a cancer patient). The focus becomes relief from pain and symptoms and not a cure. There are some who say that going into Hospice means you’re giving up or that you will no longer receive the medical care you need. That is not true – you have chosen to focus on your quality of life not the quantity and the medication used is to do just that.

A Hospice team usually includes a doctor, nurse, social worker and chaplain (if you wish). They work together to meet the patients physical, emotional and spiritual needs. This team also cares for the family who can be against the choice to, in their eyes, “give up.” There is counseling, hugs and support from a good Hospice team – my Mother’s team was unbelievable and supported and counseled our entire family through the last three days of her life.

To qualify for Hospice your doctor must state that the patient’s death is expected in 6 months or less. If a patient chooses Hospice then changes his or her mind it isn’t an issue. The patient simply goes back into the curative therapy with their doctor. You can also change your mind again and be readmitted . . . there is no pressure – it’s about what you, the patient want.

Palliative Care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from the pain, symptoms and stress of a serious illness for both the patient and family.

Again, it’s a team of specially-trained doctors, nurses and other specialists who work in partnership with the patient’s other doctors to provide an extra layer of support. It can be used at any age and at any stage in a serious illness. The services are offered in tandem with the curative treatment. A good example of Palliative Care use is in Parkinsons or Multiple Sclerosis when there are flare ups.

Both Hospice and Palliative Care are paid for by most insurance companies including Medicare and Medicaid. Both are offered in your home, nursing homes, assisted living centers, hospitals and provide respite care when the caretaker family needs a break.

What these two services offer us are choices in treatment for serious illnesses. We each have our own journey and whilst none of us hope it comes to either of these services, we can make informed decisions for us or our loved ones knowing that they exist. No matter how strong you are physically and emotionally – watching a loved one suffer is often intolerable. There are teams out there to support and comfort. Use them if you need them.

Complete Article HERE!

How to Be Present in the Moment

Many of us are so used to living in the past or the future that we have no awareness of what being in the present means. Recent research has shown that we are not as conscious as we think we are. In fact, we are unconscious most of the time as we move about our day, with […]

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Many of us are so used to living in the past or the future that we have no awareness of what being in the present means. Recent research has shown that we are not as conscious as we think we are. In fact, we are unconscious most of the time as we move about our day, with only specific decisions making their way into our consciousness. Because of this, we struggle to live in the present because our mind swings from thought to thought, only briefly settling somewhere that captures our truest form of attention. To become more mindful and present in your life, focus on these three areas.

Unselfconsciousness

Thinking about yourself and how you appear to others takes you out of the moment. When in a situation you already feel anxious about, focusing on the anxious feeling worsens it. Instead of focusing on what’s going on in your head, think instead of what’s happening around you and how you are a part of that. Mindfulness blurs the line that exists between yourself and others. Without feelings of self-consciousness, you’re able to witness the passing of feelings and perception of being evaluated by others without feeling threatened and taking it personally.

Savoring

Being so caught up in our thoughts prevents us from truly experiencing and enjoying our own lives. Instead of appreciating what we’re experiencing, we think of when the next time we’ll get to experience this again is or how the experience could be better. Learning how to direct your attention allows you to become an expert at savoring the present moment. No matter what the moment is, take note of how you’re feeling in all of your senses. Taking a few extra minutes to savor daily activities helps you to feel more joy and happiness and fewer depressive symptoms. Savor the taste of food, rather than gulping it down. Savor the feeling of fresh air as you walk to your car rather than re-playing what happened in your meeting. Savor the smell of your favorite cologne, perfume or lotion to bring yourself into the moment. Because the majority of negative thoughts involve the past or future, thinking in the present forces you to stop ruminating on the past and stop catastrophizing about the future.

Acceptance

When faced with pain or discomfort, our natural reaction is to avoid it. Resisting unpleasant feelings and thoughts means you don’t have to face them. Humans have two types of emotions: primary and secondary. Secondary emotions are ones that we feel around other feelings. When we feel stressed out about being busy at work, the primary emotion is the stress surrounding your workload. The secondary emotion is hating feeling stressed. Instead of fighting these emotions, allow yourself to take them in. Be open to how you feel in the present moment without judging your feelings or trying to push them away. Focusing on your secondary emotions instead of feeling your primary ones actually prolongs the negative feelings. Accepting these emotions doesn’t mean you like them and want to feel this way forever. It instead means that there are some things you can’t change, and how you feel right now is one of those things. Accepting your feelings doesn’t mean resigning to them.

Applying these three techniques will help you develop PRESENCE. When you are able to bring your presence to each situation in your life, be it at work, in your relationship, or even when hanging out with friends, the quality of your life experience will increase dramatically.

Complete Article HERE!

The way we die will be considered unthinkable 50 years from now

How we treat dying people needs to change.

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Fifty years ago, a physician was admitted to the hospital with stomach cancer. He wrote down in his own medical chart that he did not want CPR or to be connected to a breathing machine. His wishes were disregarded — he underwent CPR numerous times and was connected to a breathing machine until he died. Back then, not only were people treated in ways they did not want, many patients were also arbitrarily denied potentially lifesaving therapies.

Doctors decided who deserved to live or not: In one New York hospital, doctors put purple stickers on the charts of patients they determined would not receive CPR or other similar measures without the patients’ or their families’ knowledge. Decisions about life and death were subjective and opaque.

End of life care has considerably improved since then. Patient preferences now help direct physicians and nurses about what type of care they would want to receive. But 50 years into the future, we will look back on today and conclude that medicine was sorely lacking when it came to how we handle death.

Many in medicine, as well as patients and caregivers, continue to equate more procedures, more chemotherapy, and more intensive care with better care. Studies in patients with cancer and heart disease, the two greatest killers of mankind, show that patients receiving palliative care, which is an approach that focuses on quality rather than quantity of life, can actually live longer. While the goal of palliative care is to help people with a serious illness live as well as possible — physically, emotionally and spiritually — rather than as long as possible, some people receiving palliative care might also live longer since they avoid the complications associated with procedures, medications, and hospitalization

In addition, while medical advances have moved forward at blinding pace, the ethical discourse surrounding many technologies has not kept up. Take, for example, cardiac devices such as pacemakers and mechanical pumps that can be placed in the heart. Many patients with terminal illnesses who want to deactivate these devices find resistance from the health system, since some continue to equate deactivating them with euthanasia. We need to continue to make sure that even as technological advances blossom, patients remain at the center, and physicians continue to honor their wishes.

And while the palliative care specialty has greatly improved end-of-life care, too often, palliative care has been used as a way to avoid the culture change needed by all medical specialties to better handle death. Despite its many benefits, many patients and physicians are scared of “palliative care” because of its strong association with the end of life. Some have been compelled to change the title of their practices to “supportive care.” To many patients, the very name “palliative” implies that they will be abandoned, making them very reluctant to accept their services. The fact is that palliative care can, and should, be delivered to patients with serious illness alongside conventional care.

But the issues go beyond the name — one recent study showed that palliative care-led meetings with families of patients in intensive care units led to an increase in post-traumatic stress disorder symptoms among family members. Palliative care specialists are often consulted in tense situations when patients are critically ill, and they often have no prior relationship with patients or their families, who might be unprepared to have serious discussions with them. That’s why most of these difficult conversations should be delivered by the doctors and surgeons primarily responsible for treating the patients. One study estimated that by 2030, the ratio between palliative care specialists and eligible patients will be 1 to 26,000. Palliative care specialists cannot be entirely responsible for end-of-life care by themselves.

To emerge on the right side of history, the entire culture of medicine needs to be turned around. End-of-life care is not just palliative care’s business. It is everyone’s business, from emergency room doctors to primary care physicians. Physicians need to abandon outdated ideas that their role as healers is incompatible with helping patients die comfortably and on their own terms. Helping patients die well is as important as helping them live to the fullest.

Complete Article HERE!

Music therapy ministers to patient needs in ‘winter of life’

In this Feb. 4, 2019 photo, Donald Granstaff, 92, sings Louis Armstrong’s “On the Sunny Side of the Street” at his Princeton, Ky., home with board certified music therapist Kenna Hudgins, a contractor with Pennyroyal Hospice. Hudgins designs Donald’s weekly music therapy sessions to help decrease any feelings of isolation.

By MICHELE VOWELL

“At 92 years old, I finally learned to do as I’m told,

The sun comes up, the sun goes down,

The earth keeps goin’ ’round and ’round.

I’m content where I am.

In the winter of life, I do the best that I can.”

Princeton resident Donald Granstaff spends much of his time these days looking back on his life.

The 92-year-old husband, father, Navy veteran, musician, preacher and missionary served his country and God for decades around the globe. Today, Donald often reflects on those times from his bedroom while under the care of Pennyroyal Hospice.

“I was thinking the last few days, what have I accomplished?” he said Monday afternoon. “Around the world twice. Haiti and the West Indies — all that. And all I can come up with is the guys that I prayed with and I lead them to the Lord. And, I suppose that’s what it’s all about.”

To help Donald face the winter of his life, Kenna Hudgins, board certified music therapist, brings her keyboard, drums, guitar and even a tambourine, weekly to share an hour of tunes with the elderly patient at his home. Hudgins and Donald sing familiar songs and play the instruments together in an effort to make his transition easier.

“The main goal I initially assessed (for Donald) was for anticipatory grief — to work through the acceptance of the fact that we are terminal and now on hospice (care),” she said. “He’s very aware, so day after day just knowing that it’s coming and there will be changes and decline. Life is hard. Music therapy offers a way to process that musically.”

Music therapy

“Anyone who responds to music can benefit from music therapy, especially in hospice,” Hudgins said. “Music plays a role in all of our lives. It always has. It’s why we can watch a movie and feel scared, feel love or feel emotion. Music causes neurologic response — it affects our whole brain — in multiple areas simultaneously. Because of that, music therapy is not about being a musician. It’s not about understanding music. It’s about just responding.”

Hudgins, who is a contractor with Pennyroyal Hospice, uses her skills as a board certified music therapist to address the needs of patients in Christian, Todd, Trigg, Lyon and Caldwell counties in western Kentucky.

“Hospice is very grounding,” Hudgins said. “Every day that you go into somebody’s house and they’re dealing with their struggles, it brings you back to true purposes — day-to-day tasks and stresses don’t matter as much because life is short. Personally, it’s just a very rewarding field.”

Communicating with hospice social workers, Hudgins identifies patients who may benefit from music therapy. She asks family members for 10 minutes of their time to visit their loved one and share a song or two with them to assess his or her responses.

“I don’t usually talk much about it, I just let them experience it,” she said, smiling. “I’ve never been told not to come back and it’s never just 10 minutes.”

Hudgins said everyone has memories associated with certain music.

“A therapist’s job is to find that music that is significant to that person,” she said.

Working with some patients can be difficult, Hudgins said, because of the emotions tied to facing the end of life, but sharing music with them is rewarding.

“Music is so joyful,” she said. “When I get to bring joy to a family and a loved one … that’s not a sad job. … I’m really blessed to just be a part of their lives. To bring joy is just huge.”

Music with Donald

After working with Donald for several weeks, Hudgins said her therapy goals for him shifted to decreasing his feelings of isolation.

“I try to get as much participation from him physically, whether that’s playing the keyboard or drumming,” she said. “As his hands might get more stiff, clapping — anything to get his body engaged. If his body is unable, then just getting him to verbally participate. That, in and of itself, will decrease isolation.”

In Monday’s music therapy session, Hudgins wanted Donald to sing some love songs with her while playing instruments.

“With Valentine’s day coming up next week, we’re going to do sweetheart songs,” she said.

“The old sweetheart songs,” Donald said. “That’s the best kind, the old ones.”

The duo harmonized to Bing Crosby’s “Let Me Call You Sweetheart” as Hudgins played the keyboard.

“Let me call you sweetheart

I’m in love with you

Let me hear you whisper

That you love me too …”

In the middle of the song, Don stopped singing to share a childhood memory.

“I used to hear my dad sing that one all the time,” Donald said.

“Yeah? Did he sing it to your mom?” Hudgins said.

“Yeah. He worked in vaudeville for a long time,” he said. “He played mandolin and violin, and he sang all the time. He loved to sing.”

“Good memories,” Hudgins said.

Donald married his own sweetheart Betty 68 years ago. They exchanged vows on June 16, 1950.

“It was my birthday,” he said.

In the living room, Betty sat on the couch quietly listening to her husband sing and play music with Hudgins. She said music therapy is a comfort to her and Donald, who played several instruments, including the organ, keyboard and drums since he was a boy.

“I love that he’s even trying,” she said after the session. “I think this is a good thing for him because he was a musician. It meant so much to his heart. That was his life.”

Back in his bedroom, a second song, Frank Sinatra’s “My Funny Valentine,” also sparked Donald’s memories of his father.

“That’s a good song,” he said. “He used to sing songs like it.”

“I’m glad I’m making you think about your dad. I haven’t heard you talk a lot about him,” Hudgins said.

“He was quite a man. Yeah boy! He was something else,” Donald said, remembering times they would go fishing together at Lake Barkley. “He owned a couple of boats. Nice, big boats. And I used to go with him on the boats.”

Midway through the hour, Hudgins sang the chorus to a song about Donald’s life they wrote together after three or four music therapy sessions.

“I am a husband, a father, a preacher, a teacher

A born-again, saved-by-grace man …”

“When I came out of college, I was a really smooth character,” Donald said, listening to the lyrics. “I was fast and furious, and I didn’t stay that way very long. I was saved in June 1959, and before that I was a ‘religious’ human being …”

Early in their marriage, Donald and Betty took their five children to the mission field in the British Isles of the Caribbean and later in Haiti. Donald also helped another missionary build a radio station in Dominica. When they moved back to the U.S., he pastored a few churches in McMinnville, Tennessee, and Princeton. For a time, he often played the organ in the Barkley Lodge dining room.

“He was a musician from the time he was little,” Betty said. “Every church we were a part of he would play the organ until he wasn’t able to physically.”

Now, Betty said, some days can be difficult.

“Sometimes I have an overwhelming sadness. It’s hard to see him not be able to do anything,” Betty said, crying. “God love him, he never complains. Never, ever complains about anything. He’s just always up and very sweet. He’s still a testimony to everybody that visits him because of his attitude.”

Happy Trails

To close out Monday’s music therapy session, Donald and Hudgins sang the Roy Rogers and Dale Evans classic, “Happy Trails.”

“Who cares about the clouds when we’re together?

Just sing a song, and bring the sunny weather.

Happy trails to you,

Until we meet again.”

“I think it’s good. It can help lift you up,” Donald said of music therapy with Hudgins. “I’m not like some guys. Some guys get tired of it, throw their hands up and leave. I’ll try.”

Hudgins said Donald “still has a lot of life in him.”

“Whether (the patient) is a musician or not, music is a way to connect with the outside world. It can pull you into different areas of your own life, make you feel alive again,” she said.

Part of Donald’s legacy will be the song he and Hudgins wrote together.

“We have created a tangible song that he can leave for his family,” she said. “His family are musicians so they can actually play that song and play it with him.”

The chorus is:

“I am a husband, a father, a teacher, a preacher

A born-again, saved-by-grace man.

I’m a musician, woodworker, a servant, missionary

But most of all I’m just a good ole boy from Kentucky.”

Donald and Hudgins plan to meet next week for music therapy.

“Every one of us has had music in our lives that has impacted us,” Hudgins said. “It’s my job to figure out what is going to impact someone at the end of their life for the best end-of-life experience possible.”

Complete Article HERE!

Listening To Older Patients Who Want To Stop Dialysis

By Judith Graham

Dr. Susan Wong sat down with an 84-year-old patient in the hospital, where he’d been admitted with a flare-up of a serious autoimmune condition and deteriorating kidney function.

The older man told her he wanted to go home; he’d had a good life and was ready for its end. He didn’t want aggressive care — including dialysis — having witnessed his wife and son die painfully in intensive care years ago.

Wong, an assistant professor of nephrology at the University of Washington, was prepared to follow the man’s wishes, but other physicians, eager to pursue tests and treatments, disagreed. For a week, the doctors argued about what to do. Finally, they discharged the patient, who died in hospice care a few weeks later.

Older adults with advanced kidney disease who want to forgo dialysis often encounter similar resistance from physicians, according to a new study in JAMA Internal Medicine by Wong and colleagues at the Veterans Affairs Puget Sound Health Care System in Seattle, where she’s an investigator.

The researchers documented doctors’ reactions by reviewing medical charts of 851 older patients with chronic kidney disease who refused dialysis at the VA health system from 2000 to 2011. In their notes, physicians frequently speculated the patients were incompetent, depressed, suicidal or irrational.

With dialysis, people are hooked up to a machine that removes waste from their blood, usually three times a week for four hours at a stretch. Many older adults find the treatments burdensome, and medical complications are common.

Yet patients who expressed reservations about this treatment were sometimes labeled as difficult or unprepared to confront the reality of their medical condition. “Still in denial about his kidney disease and his need for hemodialysis in the near future — repeat discussions with patient and wife regarding compliance,” one nephrologist wrote. Even when patients were firm about declining dialysis, doctors repeatedly questioned their decisions.

“Clinical practice guidelines for advanced kidney disease are geared toward survival, not what would give patients the best quality of life or the greatest functional capacity,” Wong said. Another factor at play: Nephrologists aren’t trained to ask seriously ill patients what’s most important to them and shape treatment recommendations accordingly. Although most patients want to have such conversations with a kidney specialist, few do so, studies have found.

“We don’t really know how to help patients with serious illness make decisions that are right for them or what to do when they don’t really want dialysis,” said Dr. Jane Schell, an assistant professor of palliative care and nephrology at the University of Pittsburgh.

Conversations about the potential benefits and burdens of dialysis, as well as alternatives, are especially important for frail patients 75 and older who have two or more chronic conditions, such as diabetes and high blood pressure, and difficulty with daily activities such as bathing or walking — a group at risk of experiencing significant complications from dialysis but not achieving longer life.

Healthier older adults have better outcomes on dialysis — a valuable treatment for many people. “We shouldn’t limit access to dialysis based on age, but we should have meaningful conversations about goals of care and make it clear that dialysis is a choice and that patients have alternatives,” said Dr. Bjorg Thorsteinsdottir, an assistant professor of internal medicine and bioethics at the Mayo Clinic.

Options that should be discussed include comprehensive conservative care, which calls for preserving as much kidney function as possible, managing a patient’s health problems, dealing with symptoms such as nausea, swelling, itchiness, pain and breathing difficulties, and preparing for end-of-life care; peritoneal dialysis or hemodialysis at home; and palliative dialysis, a less intensive version of this treatment that keeps people alive for longer but isn’t meant to restore kidney function.

Comprehensive conservative care programs are few and far between (in New York City, Pittsburgh, Seattle, San Francisco and a few other locations), but efforts are underway to change that. With funding from the American Society of Nephrology, Schell and colleagues at the University of Pittsburgh have developed an online conservative care curriculum set to debut in March. Nineteen nephrology training programs for physicians are set to participate.

Also, the Pathways Project, funded by the Gordon and Betty Moore Foundation, is working to make palliative care (also known as supportive care) for patients with advanced kidney disease widely available. (KHN’s coverage of end-of-life and serious illness issues is also supported in part by the Gordon and Betty Moore Foundation.) Dr. Alvin Moss, co-investigator of the project and professor of medicine at West Virginia University School of Medicine, said the project hopes to sign up 10-15 dialysis centers this year.

Sometimes, patients choose a time-limited trial of dialysis with the understanding that they can change their minds down the road.

Cyndy Patton’s 86-year-old mother, Isabel, learned last spring she had advanced kidney disease after going to a Pittsburgh hospital, sickened by repeated bouts of vomiting. Physicians suggested she try dialysis for a few weeks and see if her kidneys might rejuvenate. (The older woman had survived open-heart surgery and a stroke and was living on her own after her husband’s death.)

After a week in the hospital and another week in a rehabilitation center, there was no change: Patton’s mother still needed dialysis. Five weeks later, she confessed to her daughter that the treatment was making her miserable. But giving it up felt like committing suicide, she told Patton — an unacceptable option.

A week later, Isabel had changed her mind. “This is not a life I care to lead, being hooked up to these machines,” she told Patton. “What am I doing this for?” The older woman had consulted with Schell at the University of Pittsburgh about palliative care and hospice care, and she chose hospice.

Dialysis ended and the family gathered at Isabel’s bedside. “She was all ready to die — but she didn’t, and is still living to this day,” Patton said.

It’s an example of how hard it can be to predict what will happen to any given patient with advanced kidney disease. What’s important for the patient to understand is that “it’s not always all or nothing — dialysis or death,” Thorsteinsdottir said.

“Patients have to be very assertive and tell their medical team: This is what I want and what I don’t want,” Moss said. For more information, he suggested people explore the websites of the Coalition for Supportive Care of Kidney Patients (he chairs that organization), the National Kidney Foundation and the American Association of Kidney Patients, and “really spend some time learning about your options.”

Complete Article HERE!