Tag: doula

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.

Safety in home births

With only about five percent of Canadians giving birth at home, one might think the practice is dangerous and that is why the number is so low. On the contrary. Studies show that, as long as the mother is at low risk, it is as safe to give birth at home as it is to give birth in a hospital.

Dr. Michael Klein is a family physician, pediatrician, newborn-intensive-care specialist, maternity care researcher and senior scientist emeritus at Vancouver’s Child and Family Research Institute.

“I am a part of a number of ongoing research projects,” said Klein. “We look at old and new technologies and assess them in relation to birth. I’m about normal birth – not complicated birth – keeping birth normal.”

photo - Dr. Michael Klein
Dr. Michael Klein (photo from Dr. Michael Klein)

In 2009, Klein worked on a study that looked at the safety of home births, evaluating three groups of births: home births by a midwife, hospital births by the same midwives, and a matched sample of physician births. The researchers looked at women who were identical in their risk profile and found that, regarding fetus development and the newborn baby, there was no difference in these three groups.

“Home birth seemed to be as safe as hospital birth, whether by the doctor or by the same midwife,” said Klein. “There are now two other studies from Ontario that show the same thing.

“Home birth is integrated within the health-care system in B.C.,” he continued. “Midwives are supported and part of the system, so when the midwife needs help from a hospital backup system, she gets it.

“Of course, what you also see is dramatically more interventions on the physician-hospital side than at home. And you find, interestingly, that the midwives – the same midwives delivering in hospitals – have results in terms of interventions of various sorts that are closer to the doctor’s side than they are to themselves at home.”

Klein attributes this observation to the influence of the hospital itself, a setting that is anxiety-driven. There may also be differences in the population, with women wanting a midwife in a hospital differently motivated from those wanting a midwife in a home setting.

In terms of the methodology of the study, it was very important that, once a woman was beginning her labor at home, no matter if the birth ended up being in a hospital or not, that she was counted in the home birth column or category.

“Roughly, a third of midwifery births will be home births,” said Klein. “That’s because this is what women are requesting. The model is what is called a ‘woman-centred model.’ If a woman wants a home birth and she meets the criteria in terms of her risk profile, then the midwife is obligated to deliver that service in the way she wants.

“I think there’s no question that we should have more home births. You may be unaware, but the minister of health in B.C. has supported that notion – that home births should be … I wouldn’t say promoted, but certainly made available.

“Women need to know what the options are and they need to know if they need help during labor that they will get it. A home birth, to be safe, needs to be within 30 minutes of an operating room. Contrary to what most people believe, things don’t suddenly go wrong. They evolve.”

Something else that can be a limiting factor in increasing home birth numbers is the lack of midwives across Canada.

“The joke is that you have to register with a midwife before conception,” said Klein.

In British Columbia, the midwifery class recently doubled in size. Why not quadruple the class size to keep up with demand? The simple answer is that the system is not currently able to support that, although it is estimated that a home birth costs the system between a third and half as much as a hospital birth.

“I think it’s too complex,” said Klein. “What we are talking about now is a serious planning exercise. That’s not happening. I think it will take time for the system to collapse a little bit more before it happens.

“The other player in all of this, which we haven’t talked about yet, is the doula. That movement is, of course, gaining more and more popularity. In some settings, it’s been so successful that some hospitals are supporting the doulas’ salaries.”

According to Klein, doulas are successful in lowering the caesarean-section rate and other interventions. “When you lower the c-section rate, it has a big impact on the hospital budget, because a person who has a caesarean stays twice as long in the hospital than one who has a vaginal birth,” he said.

Avoiding a c-section means less likelihood of a uterine scar in subsequent pregnancies. “Once a pregnant woman has a uterine scar, the whole reproductive trajectory is changed,” said Klein. “One is more likely to have a whole series of problems, complicated next pregnancies, placental attachment problems, ectopic pregnancies, stillborn births and infertility. With the c-section rate at four percent in home births and up to 30% in hospital births, that many more women will end up with a uterine scar and be at higher risk of complications.”

photo - Dr. Brian Goldman
Dr. Brian Goldman (photo from Dr. Brian Goldman)

Dr. Brian Goldman, an emergency physician at Mount Sinai Hospital in Toronto, and the host of White Coat, Black Art on CBC Radio One, has, for years, had an eye on the growing demand among women in Canada for licensed midwives.

“Midwives are experts in low-risk, uncomplicated births, as are family doctors,” said Goldman. “However, even though low-risk birth is a core part of the training of family physicians, very few of them want to attend low-risk births once out in practice.

“In Canada, we have a situation in which the vast majority of births – high-risk and low-risk alike – are attended by obstetricians. These specialists have tremendous knowledge, skill and experience which, in my opinion, is best put to use managing women who are likely to have a complicated pregnancy and birth. We need more professionals like midwives and family doctors to attend low-risk births.

“Most family doctors run busy practices and find it difficult for practice, family and social reasons to devote a significant amount of time to attending women in labor through the night. To me, midwives represent the likeliest prospect for increasing the pool of professionals qualified and interested in attending low-risk births.”

Rebeca Kuropatwa is a Winnipeg freelance writer.