health care – Page 5

Rare transplant

Prof. Eytan Mor, left, and Dr. Evyatar Nesher with a kidney transplant recipient at Petach Tikvah’s Beilinson Hospital, which is part of the Rabin Medical Centre. Mor is director of the transplant department and Nesher, the department’s deputy head. (photo from Ashernet)

About nine years ago, a 55-year-old woman with a congenital kidney disease underwent a kidney transplant in the Philippines. Last week, she died following a stroke and her brother, who suffered from the same congenital disease and needed a transplant, received his sister’s kidney, which was still viable, though she had died. This was the first time such a surgical procedure had been performed in Israel, and it is thought that this procedure has been performed only five times in the world. This is also the first time that such a transplant has been carried out between family members. It is hoped that this landmark operation will encourage more live donations of kidneys.

Caring for people at life’s end

Henry Fersko-Weiss, president of the International End of Life Doula Association. (photo from Henry Fersko-Weiss)

Doulas offer support to expectant mothers, guiding women and their partners through the childbirth process and into their first steps of parenthood. Now, a similar concept is gaining ground to fill a need at the end of our lives.

Fear, exhaustion and uncertainty often leave us unsure of how to best support a loved one during their last days, while we also try to deal with our own impending loss.

The idea for end-of-life doulas was conceived by licensed clinical social worker Henry Fersko-Weiss, who works in hospice care in New York and New Jersey.

“There seemed to be a gap in the services that were traditionally available to people,” Fersko-Weiss told the Independent. “As wonderful as hospice is in the U.S., where most people die in their own homes – which is the ideal, unless there’s a cultural reason not to – that’s when people really need help the most.

“They recognize that death is very close and now they can’t avoid thinking about it. They are exhausted and the care demands have increased. They need more help than they were able to access through normal programs. So, I started to think about how to figure this out … and, at the time, a friend of mine was learning how to become a birth doula.”

Fersko-Weiss had not heard about doulas before then. But, as his friend shared with him what she was learning in her training, he increasingly felt this would also be an ideal way to approach the end of life.

“There are a lot of tremendous similarities between birth and death, clear differences as well,” he said. “I became intrigued and started learning more about birth doulas. And, I took the training myself, so I would learn exactly what they were learning.”

By then, Fersko-Weiss was convinced that there were many tools, techniques and principles of care from the birthing world that could be transferred in a very positive way to the end-of-life sphere. So, he went to Carolyn Cassin, the chief executive officer of Continuum Hospice Care in New York City, where he was working at the time, and presented the idea to her. She encouraged him to follow it through.

By 2015, Fersko-Weiss had established a not-for-profit organization that trains and supports end-of-life doulas.

“Currently,” he said, “my work is focused on promoting the use of end-of-life doulas through organizations that care for people at end of life, as well as training people publicly and helping them to achieve certification through the organization that I head: the International End of Life Doula Association.”

To create the program, Fersko-Weiss incorporated some of the concepts from the birth doula training, such as visualization and guided imagery, techniques used by birth doulas to help ease pain.

“I started building on that and writing the training, looking for material that would support some of the things that were important and created a model of the different phases of care that this would offer,” he said. “At that first training, I had 17 people. Once we went through that first training, which was a weekend – which has become the standard for us, about 22 hours – we went on and kept training, and developing the program, and serving patients and their families.”

There are three phases to the model Fersko-Weiss has created, the first of which is summing up and planning. This occurs as early as possible, when the patient and the family are shifting their focus to end-of-life comfort care and away from a cure.

“But, even if they were still focused, to some degree, on a cure, parts of what we do would still make sense, probably even months before somebody would be at the point of dying,” said Fersko-Weiss. “We work on exploring the meaning of their life, as they look back over their life, and help them think about what they might want to leave behind as a legacy that reflects that meaning that they’ve uncovered or what they think is important for their loved ones and friends to remember them by or to carry into their lives.”

Psychologist Erik Erikson has examined the different developmental stages that we go through within our lifespan and refers to the last of these stages as “integrity versus despair.”

“When somebody is dying and facing death, they are automatically propelled into that final developmental stage, no matter what age,” said Fersko-Weiss. “In that stage, they have to contend with coming to the point of a positive completion of their life as they go through reviewing their life. Or else, they move towards despair, anguish and feeling that their life either didn’t matter or didn’t fulfil their dreams.”

The other aspect of the first phase of Fersko-Weiss’ program is planning what one’s last days of life will look like. This entails finding out what would be most helpful to them and their family to allow those last days to unfold in a way that honors who they are, carries deeper meaning for everyone involved and makes it easier for the person to approach death.

The second phase of the program is when the person is actively dying, which generally comprises the last two to four days of life.

“We stay with people as much as possible, around the clock,” said Fersko-Weiss. “We help them understand what is coming next. We support the family emotionally and spiritually, and we assist with physical care in a basic way.

“We will stay [with the family] through the death,” he continued. “We will wait hours afterwards to give them time to process it and have the death experience sink in a bit. We sometimes call the funeral home for them, or friends, if they are too emotional. We stay with them through the body being removed from the home and also up to the point where they feel more comfortable being on their own.”

Phase three of the program has the doula returning to the family three to six weeks following the death to review and tell the story of the dying process. This helps the family see some of the many beautiful and loving things they did together during that time, reminding them how things went, as they may have not have been thinking clearly during that time due to the pain of loss.

“This is done as a way to reframe some of the negative pieces that they are carrying that may be coming back to them over and over again in their mind, and help them to begin the very early stage of grief, understand what grief work is about,” said Fersko-Weiss. “We help them through some of the early grief work and then refer them to programs in the community or within the organization that were perhaps involved with the care as well. We may, at that point, do a final ritual to bring closure to our work with them.”

The end-of-life doula service is provided primarily by hospice and out-care programs, which may be part of a hospital. Fersko-Weiss is working to spur interest in this service at assisted living facilities and nursing homes. This type of care is also starting to be done by groups of people getting together to provide the service to a dying person and their family.

Fersko-Weiss has been teaching at the Institute of Traditional Medicine in Toronto, doing a compressed form of the doula training he offers in the United States. Students attend classes one weekend a month for six months, and graduate as certified contemplative end-of-life-care practitioners.

“My understanding of hospice in Canada is that many people are very underserved,” he said. “There are a lot of people who are dying without the ability to access hospice care in Canada.”

Fersko-Weiss has also been working with a Canadian organization called the Home Hospice Association.

“They are still in the process of forming, but their intention is to provide home hospice in Canada and to solve the problem of lack of access,” he said. “Their intention is to build into that program the utilization of end-of-life doulas.”

Rebeca Kuropatwa is a Winnipeg freelance writer.

Taking care of elders

Cindy Greenlay, therapeutic recreation manager at Winnipeg’s Simkin Centre, is one of the first to admit that no one plans to retire and move into a care home. But, she explained, “Circumstances happen and the support we’re able to provide here is something needed in the community.”

On Feb. 18, the women’s philanthropy of Combined Jewish Appeal (CJA) in Winnipeg hosted an educational evening at the Simkin Centre on the centre’s programming. Daniela Jacobson, co-chair of women’s philanthropy, began the event, noting that the Simkin Centre “is our newest agency to the Jewish Federation of Winnipeg.” She then gave the floor to Greenlay.

photo - Simkin Center’s therapeutic recreation manager, Cindy Greenlay — Simkin Center’s therapeutic recreation manager, Cindy Greenlay. *(photo by Rebeca Kuropatwa)*

According to Greenlay, people don’t come to the Simkin Centre at the end of their lives to die – they come to continue living. Something about which the centre staff feel strongly is the importance of getting to know each of the residents individually. “We don’t assume that everyone who is 75 likes to play Bingo,” said Greenlay by way of example.

The staff meet with each resident several times and gather as much information about what he/she likes to do, so they can build activities to match. One of the most important things to understand, said Greenlay, is that residents have a lot of free time on their hands and the centre needs to fill that time with relevant programming.

“We need to do that every single day – 13 hours a day,” she said. “As 80 percent of our population is cognitively impaired, so we have some people here who make those choices…. We’re all trained in specific areas to adapt to different disabilities…. We have one recreation staff for every 40 residents. That person works five days a week to fill up this big piece of the pie.”

The centre’s programming is funded by the local Jewish federation and private donors.

“To brag a little bit, our facility is chosen every year by Red River College to bring the recreation students to,” said Greenlay. “The students come here every fall to see what they want to be when they ‘grow up.’ They shadow our staff every fall to see what the programs are supposed to look like.”

Until a year ago, Simkin’s spiritual health care was led by Rabbi Neal Rose, and it was based on a chaplaincy model. “Once Rabbi Rose retired, the board met and did some rethinking,” said Barb Findlay, the centre’s spiritual health care practitioner. “They researched what spiritual health could look like going forward. I think that in the whole world – and the Jewish world is not different – generally, people today are less religious and more spiritual. People use yoga and meditation and different ways to access the Divine. It’s interesting, as I go around and meet new residents and introduce myself, I get one refrain that I hear all the time, ‘Wait a minute. I’m not too Jewish.’ And, you know, actually, they are very Jewish.”

photo - Barb Findlay, Simkin Centre’s spiritual health care practitioner — Barb Findlay, Simkin Centre’s spiritual health care practitioner. *(photo by Rebeca Kuropatwa)*

Spiritual health has been recognized by the Canadian Medical Association and the Winnipeg Regional Health Authority (WRHA) as an integral part of the health profile, which includes physical and emotional health.

“Spirituality is defined as that which gives meaning and purpose to life, besides the physical,” explained Findlay. “The purpose of spiritual health is to symbolically walk beside people and to occupy that liminal space between what’s known and what’s not known in life.”

Although the overwhelming majority of people at the Simkin Centre are Jewish, the centre operates as the Victoria Hospital emergency placement location. As such, the spiritual health personnel have to provide support for people from all religions, including Buddhists, Catholics, Evangelical Christians and First Nations.

“What is important is their belief system and helping them to boost that and work with that for whatever needs they have,” said Findlay. “Israel has embraced this new profession. They named it the ‘livui ruchani,’ which is Hebrew for ‘spiritual accompaniment.’

“The Simkin population is roughly 200, and about 15 percent aren’t Jewish,” she continued. “The average age is 90, and about 85 percent of our people have some element of dementia. Ninety-six percent of elders live out their lives in the community with or without some supports, so, what we have here is a very small percentage of our elderly population – about four or five percent.”

Dr. Harvey Chochinov, a geriatric psychiatrist in Winnipeg, has dedicated much of his work focus to end-of-life care, and has found that distress at the end of life is usually connected with people feeling as though they are a burden.

“He’s developed a whole process which involves questioning and reflection, so we can help people review and rebuild, and hopefully move away from feeling they’re a burden for their loved ones,” said Findlay.

The evening’s talk ended off on a lively and light note, with Cindy Bass, the centre’s music therapist demonstrating how she engages residents. “Music memory is one of the last remaining faculties for the elderly population with Alzheimer’s disease,” said Bass. “For example, if you take a song like ‘My Bonnie Lies Over the Ocean,’ everybody knows it. And it’s been shown that some people who can’t speak anymore can still sing, which is also why it works well as therapy for stroke victims, helping them relearn to speak.”

Music can increase attention span and be very useful for the cognitively impaired, she added, as it opens new brain pathways, evidence of which has been seen using MRIs.

Bass led the crowd in a few songs to illustrate the power of music and she explained the many benefits gained through music, including the building of community ties and increased socialization, as well as its use in prayer and to enhance self-expression.

“Music,” she said, “provides people of all ages, regardless of disability, with ample opportunity for meaningful responses to all aspects of our environment.”

Rebeca Kuropatwa is a Winnipeg freelance writer.

Mixing mercy and medicine

At the close of what Western countries call Valentine’s Day, a tenuous ceasefire went into effect in war-torn eastern Ukraine. Unfortunately, the days prior to the truce were not what you would call all “hearts and flowers.” Up to the last minute, both sides pushed to make territorial gains. We can be sure that no love has been lost.

Needless to say, tanks, rockets and guns do not tell the whole story of the armed conflict. Beyond the military operations are the civilians whose lives have been affected.

One critical result of the fighting is that the overall health situation in Ukraine has rapidly deteriorated. (Even in peacetime, however, the health situation was not on par with Western medicine.) Recently, the United Nations reported that drug supplies are running out and that the country has seen a rise in the number of tuberculosis diagnoses. As there are not enough shelters for displaced people whatever their health status, some of these individuals are being sent to hospitals. This in turn has created a lack of treatment space for acute medical cases. To date, these are the statistics on the war in Ukraine:

5,486 people killed and 12,972 wounded in eastern Ukraine
5.2 million estimated to be living in the areas of conflict
978,482 internally displaced people, including 119,832 children
600,000 have fled to neighboring countries, two-thirds of whom have gone to Russia

How can we in the West appreciate what is happening to the people living in the conflict zone? One unlikely way is to reconsider Geoffrey Smith’s powerful 2007 documentary The English Surgeon. The film deals with how medicine is practised in Ukraine and puts a personal face on what life (in more promising times, perhaps) is like for Ukrainians.

This film reveals how two dedicated neurosurgeons make do with scarce medical supplies with a goal to improve their patients’ quality of life. In the course of this sophisticated British-produced documentary, viewers become intimately acquainted with the hospital exploits of this medical odd couple: Dr. Henry Marsh, a British neurosurgeon, and his Ukrainian counterpart, Dr. Igor Petrovich Kurilets. Smith’s movie is enlightening and viewers can glean much about Marsh’s point of view. In his experience, performing the surgery itself is not the hard part, it’s knowing when to treat that’s complicated.

Early in the film, Marsh talks about the importance for him of helping other people; he questions what we are if we don’t try to help others. When the movie was filmed, Marsh had already been volunteering in Ukraine for 16 years. He tells us that when he first started his project, he found surgical conditions comparable to those that existed in the West 60 years prior. He was appalled at the misdiagnoses he encountered, and by the stories of patients that could have been helped had they received appropriate medical interventions earlier.

The film exudes irony and humor as viewers get to know Marsh. He explains that he always liked working with machines and using his hands. He also enjoys the sensory aspects of working with wood. At one point, he says that surgeons like blood, and he likens surgery to a kind of sport.

Kurilets displays no less of a quirky wit. For instance, he points out a painting hanging on his wall. In the picture are happy Cossacks sitting around a table. Kurilets thinks there are many similarities between Cossacks and surgeons. He comments that in the painting, the Cossacks could be gathered around an operating room table. He appreciates the Cossacks’ aggressiveness. Actually, his own pro-activeness has gotten him into trouble with the authorities; he later reveals that he was unemployed for two years following repeated run-ins with the Soviet system. Ironically, he currently rents rooms from a hospital run by the KGB, his former nemesis.

Kurilets is still a doer today, albeit perhaps slightly more pragmatic than he once was. He has plans to build a new hospital. He underscores his philosophy of life by explaining that the point is not to just make plans – something that happened a lot in the former Soviet Union – but to actually do, to get things done.

In fact, these two individuals are pragmatism personified. Marsh and Kurilets buy brain surgery tools in the local open-air market. Kurilets’ Bosch drill comes from this market. Marsh also regularly donates equipment to Kurilet’s practice. In an understated way, we learn some of the real costs of surgery in this area of the former Soviet Union versus the West: the 80 Sterling drill bits that Marsh’s hospital uses once will be used by Kurilets for 10 years.

Marsh also confronts deeper issues. He struggles with being able to leave patients with hope, even when there is nothing that surgically can be done.

One patient who can be treated is Marian, a young, rural man of limited financial resources. Marian has a brain tumor that could either leave him severely disabled or kill him. The doctors tell him that the only way they can help is by conducting brain surgery, but without anesthesia. Marian agrees.

The operating room in which this incredible procedure takes place is so small that, at one point, a member of the surgical team has to bend down, almost crawling to get to the other side of the room. Even in this incredibly tense scene, Marsh reveals his wry humor by saying that the healthy section of the brain should look “like a good cream cheese,” not rubber. He does not underestimate the tremendous vitality of the organ on which he operates, however. In surgery, he says, “We are the brain.”

Sharing some of the soul-searching he does in his practice, Marsh humbly admits that he has made some big mistakes. He narrates the painful story of one young Ukrainian patient that he brought to England for surgery. Marsh reveals that both of Tanya’s surgeries went terribly wrong. Even today, he can’t put Tanya’s story aside. He tells Kurilets that he thinks about Tanya a lot. Kurilets agrees that there were lessons to be learned from her case. But Marsh doesn’t just contemplate Tanya; he seeks physical contact with this lost patient. In a haunting moment of tremendous honesty and humanity, he pays a visit to her family members. He reveals to Tanya’s family how nervous he was before the visit.

The English Surgeon is a powerful movie, stunning, but frequently heart-wrenching. It displays not just the truth of the situation in Ukraine, but the truth about people.

The film is available online without charge at documentarystorm.com/the-english-surgeon or on Netflix Canada. You can view an interview with the filmmaker at pbs.org.

Deborah Rubin Fields is an Israel-based features writer. She is also the author of Take a Peek Inside: A Child’s Guide to Radiology Exams, published in English, Hebrew and Arabic.

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A number of organizations are trying to help civilians in Ukraine. Working at opposite ends of the life spectrum are two Jewish charities: the Survivor Mitzvah Project (survivormitzvah.org), which helps elderly Holocaust survivors residing in Ukraine, and Tikva Children’s Home (tikvaodessa.org), whose mission is to care for “the homeless, abandoned and abused Jewish children of Ukraine and neighboring regions of the former Soviet Union.”

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While many are probably familiar with Jonathan Safran Foer’s book Everything Is Illuminated (which was also made into a film in 2005), the Good Reads website has assembled a list of other books dealing with Ukraine (goodreads.com/places/76-ukraine). The list contains fiction and non-fiction books for children and adults.