Dignity therapy: Making the last words count

Guided conversations with the terminally ill are popular with patients, families and doctors who’ve experienced them. But are they truly beneficial? Researchers are looking beneath the anecdotal appeal.


By Lola Butcher - October 08, 2021

This article was originally published in Knowable Magazine

In the mid-1990s, psychiatrist Harvey Max Chochinov and his colleagues were researching depression and anxiety in patients approaching the end of their lives when they became curious about this question: Why do some dying people wish for death and contemplate suicide while others, burdened with similar symptoms, experience serenity and a will to live right up to their last days?

Over the next decade, Chochinov’s team at the University of Manitoba in Canada developed a therapy designed to reduce depression, desire for death and suicidal thoughts at the end of life. Dignity therapy, as it is called, involves a guided conversation with a trained therapist to allow dying people to speak about the things that matter most to them. “It is a conversation that we invite people into, to allow them to say the things they would want said before they are no longer in a position to be able to say it themselves,” Chochinov says.

Dignity therapy is little known to the general public but it has captivated end-of-life researchers around the world. Studies have yet to pin down exactly what benefits it confers, but research keeps confirming one thing: Patients, families and clinicians love it.

These end-of-life conversations are important, says Deborah Carr, a sociologist at Boston University who studies well-being in the last stages of life and explored the topic in the 2019 Annual Review of Sociology. A key need of people who know they are dying is tending to relationships with people who are important to them. This includes “being able to communicate their wishes to family and ensuring that their loved ones are able to say goodbye without regret,” she says.

And the closer we get to death, the more we need to understand what our lives have amounted to, says Kenneth J. Doka, senior vice president for grief programs for Hospice Foundation of America. “As people reach the end of life, they want to look back and say, ‘My life counted. My life mattered. My life had value, had some importance,’ in whatever way they define it,” Doka says. “I think dignity therapy speaks to that need to find meaning in life and does it in a very structured and very successful way.”

A dignified ending

Chochinov’s search to understand why some people feel despair at the end of life while others do not led him to countries like Belgium, the Netherlands and Luxembourg, where euthanasia and assisted suicide have long been legal. There he learned that the most common reason people gave for seeking assisted suicide was loss of dignity.

To learn more, Chochinov and his colleagues asked 213 terminal cancer patients to rate their sense of dignity on a seven-point scale. Nearly half reported a loss of dignity to some degree, and 7.5 percent identified loss of dignity as a significant concern. Patients in this latter group were much more likely to report pain, desire for death, anxiety and depression than those who reported little or no loss of dignity.

Dignity at the end of life means different things to different people, but in interviews with 50 terminally ill patients, Chochinov and his colleagues found that one of the most common answers related to a dying person’s perception of how they were seen by others. “Dignity is about being deserving of honor, respect or esteem,” Chochinov says. “Patients who felt a lost sense of dignity oftentimes perceived that others didn’t see them as somebody who had a continued sense of worth.”

Dignity therapy is tailored to enhance this sense of worth. In a session, a therapist — typically a clinician or social worker — carefully leads the patient through a series of nine questions (see graphic) that help a person express how their life has been worthwhile. “It’s not like a recipe, that you can just read out these nine questions and then call it dignity therapy,” Chochinov says. “We train therapists so that we can help them guide people through a very organic kind of conversation.”

The session typically lasts around an hour. About half is spent gathering biographical highlights, and the other half focuses on what Chochinov calls the “more wisdom-laden” thoughts that the patient wants to share. A few days later, the patient receives an edited draft for review. “There’s an ethos of immediacy — your words matter, you matter,” he says. “They can edit it and they can sign off on it to say, ‘That is what I want as part of my legacy.’”

Dignity therapy uses this standard set of nine questions as a starting point for discussion. The questions invite the dying person to evaluate their life and offer their wisdom to family and friends.


But does it work?

Miguel Julião, a physician in Lisbon, Portugal, specializes in helping patients who have difficult symptoms, which is why he was asked one day a few years ago to see a patient suffering with unbearable pain. “The minute I got into his room, he told me ‘I would like you to help me die soon,’” Julião says. “I told him, ‘I don’t agree with euthanasia and I don’t do it, but I would like to know about you as a person and what you are most proud of in your life.’”

In the next few minutes, Julião learned about the man’s pride in raising “two good human beings” and stories of their life as a family. And he received an invitation to return for more conversations, which continued until the man died a month later.

The encounter prompted Julião, who was pursuing his doctorate at the time, to pivot his research and focus squarely on dignity therapy. He has had lots of company. Chochinov estimates that nearly 100 peer-reviewed research papers, and at least four in-depth analyses — “systematic reviews” of the accumulated science — have been published so far, and more studies are ongoing. The largest study yet, of 560 patients treated at six sites across the country, is now being conducted by Diana Wilkie, a nursing professor at the University of Florida, and colleagues.

Wilkie also helped conduct the first systematic review, published in 2015, which came up with a conundrum. When all studies were viewed together, the evidence that dignity therapy reduced desire for death was lacking. “The findings have been mixed,” she says. “In the smaller studies, you see benefit sometimes and sometimes not; in the larger studies, not.”

The most definitive study — Chochinov’s original clinical trial, completed by 326 adults in Canada, the United States and Australia who were expected to live six months or less — found that the therapy did not mitigate “outright distress such as depression, desire for death or suicidality,” although it provided other benefits, including an improved quality of life and a change in how the patients’ family regarded and appreciated them. A few years later, however, Julião conducted a much smaller trial in Portugal in which dignity therapy did reduce demoralization, desire for death, depression and anxiety.

Julião thinks that the different outcomes reflect differences in the patient groups: His study focused on people experiencing high levels of distress, while Chochinov’s did not. But Julião also notes that his study was small, with only 80 participants. “We still need more evidence,” he says. “But, on the other hand, you see a high interest among clinicians, because they see it work in daily practice.”

Positive and negative results also may depend upon how studies measure “success.” Scott Irwin, a psychiatrist at Cedars-Sinai Cancer in Los Angeles, worked at a San Diego hospice that introduced dignity therapy in 2009. “It was absolutely worthwhile — no question,” Irwin says. “Not only did the patients love it, but the nurses loved it and got to know their patients better. It was sort of a transformative experience for patients and the care team.”

Researchers reviewed the “legacy documents” — the tangible product of dignity therapy — of 27 patients at a hospice in San Diego to determine what they talked about with the therapist. These are the most common themes that emerged, shown with the percentage of patients who touched on that theme.


Indeed, Wilkie’s literature review reported “overwhelming acceptability, rare for any medical intervention.” Patients seem to get something out of it, even if that “something” isn’t captured by measures like reduced desire for death. In one study of 100 terminally ill patients who received dignity therapy, 91 percent reported feeling satisfied or highly satisfied; in another, 93 percent gave high ratings of satisfaction.

In Portugal, family members of dying individuals have prompted Julião to develop new uses for the therapy. He and Chochinov first adapted the interview to be appropriate for adolescents. More recently, two individuals told Julião they regretted that their loved ones had died without receiving dignity therapy, prompting the researchers to create a posthumous therapy for surviving friends and family members.

In a study of this interview protocol for survivors, “we have wonderful, wonderful comments from people saying, ‘It’s like I’m here with him or with her,’” Julião says. Doing dignity therapy posthumously could be useful in helping families deal with bereavement, he says — an idea he’d like to test.

Barriers to use

But for all its appeal, few patients actually receive dignity therapy. Though the tool is well-known among clinicians and social workers who specialize in caring for seriously ill patients, it is not routinely available in the US, Doka says.

A primary barrier is time. The therapy session is designed to last just one hour, but in Irwin’s experience at the hospice, patients were often too tired or pain-ridden to get through the entire interview in one session. On average, a therapist met with a patient four times. And the interview then had to be edited by someone trained to create a concise narrative that is true to the patient’s perspective and sensitive in dealing with any comments that might be painful for loved ones to read.

Julião says he transcribes each patient’s interview himself and also edits it into the legacy document. The entire process typically takes about eight days; he suspects this is why he is one of only two people who provide dignity therapy in Portugal. He says he has enthusiastic responses from clinicians and social workers attending the lectures and workshops he has conducted since 2011. “But they don’t do it clinically because it’s hard for clinicians to dedicate so much time to this.”

Dignity therapy is most widely available in Winnipeg, its birthplace, where all clinicians at Cancer Care Manitoba, the organization that provides cancer services in the province, have been trained in the protocol. If a patient expresses interest, or a clinician thinks a patient might be interested, a referral is made to one of the therapists, among them Chochinov.

“And then I see them, either in their hospital bed or more typically at their home,” he says.

A few months ago, he spent about an hour with a dying woman. She told him about her proudest accomplishments and shared some guidance for her loved ones. 

A few days after he delivered a transcript of the conversation, the woman thanked him by email for their discussion and for the document that “will give my family something to treasure.”

“Dignity therapy is part of the bridge from here to there, from living my life fully to what remains at the end,” she wrote. “Thank you for helping me to tell this story.”


Book Review: Meg Lowman's "The Arbornaut" Chronicles Her Pioneering Forest Canopy Research

Field biologist Meg Lowman, known as “Canopy Meg,” describes her pioneering research amid the world's forest canopies in "The Arbornaut."


Meg Lowman climbing a tree
Meg Lowman climbing a tree
Photo by Dimossi at English Wikipedia, CC BY-SA 3.0, via Wikimedia Commons
BY SARAH BOON - September 24, 2021
This article was originally published in Undark
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When you consider that “upward of half of all terrestrial creatures live about 100 feet or more above our heads,” as biologist Meg Lowman notes in “The Arbornaut: A Life Discovering the Eighth Continent in the Trees Above Us,” it makes sense for scientists to go to where the action is. But it’s only been in recent decades that researchers have systematically explored the canopies of the world’s tropical and temperate forests, in large part due to the efforts of so-called arbornauts like Lowman.

It’s daunting work, and often dangerous. And while there have been others in the past who have used ropes and climbing gear to conduct scientific research, Lowman in 1979 pioneered a simple method of rigging a tree for climbing using a slingshot. Essentially, from the ground she shoots a weighted fishing line into the upper branches of the tree, then attaches that fishing line to a nylon cord and hauls it over the same pathway. She then ties a heavier climbing rope to the nylon cord and pulls it up and over the support branch.

“The Arbornaut: A Life Discovering the Eighth Continent in the Trees Above Us” by Meg Lowman (Allen & Unwin, 368 pages)


Lowman and an Australian colleague also did groundbreaking work building canopy walkways. During a field trip with Earthwatch, an organization that matches citizen scientists with researchers around the world, one of the volunteers got her hair caught on the climbing rope. She had to cut her hair without cutting the rope to free herself — a dicey situation, especially for a volunteer. So Lowman and the owner of the lodge at which they were working discussed how they could bring climbers safely into the canopy via an aerial path. This would also be a boon for research, as many researchers could work in the canopy at the same time. The next year, the world’s first canopy walkway was constructed in Lamington National Park in Queensland, Australia. Lowman has also accessed the canopy using construction cranes and an inflatable raft attached to a dirigible.

The book traces her scientific career, from her study of plants and bird eggs as a child in upstate New York, to her undergraduate years studying tree growth and her master’s research studying tree phenology (spring leafing), and finally to her Ph.D. work, where she got into her specialty: the effects of plant-eating insects on the leaves of tropical trees. The field was understudied because most researchers didn’t access the canopy to measure it — and it’s that access that Lowman developed.

She repeatedly notes that there is a research bias when scientific findings are based on studies done just on the forest floor or in the lower parts of trees, excluding the canopy. She likens it to looking just at someone’s big toe to diagnose an illness.

One of Lowman’s recurring themes is the importance of the scientific process, which she expresses as a series of iterative questions; indeed, the longest section of the book describes her Ph.D. research and the additional sub-studies she did to rule out bias in her main study. The reader is bombarded with experiment after experiment that Lowman conducted to answer smaller questions that arose during the course of her research, like whether insects are drawn to eat the water-resistant ink she uses to label leaves; whether they can find their way back to their food source if they fall out of the canopy; and whether young or old leaves are more toxic to the creatures.



This article was originally published on Undark. Read the original article.





Near Certain Extinction for the Northern White Rhino May Yet be Thwarted

Only two female northern white rhinos remain in the world, but owing to assisted reproductive technology and a little help from their southern relatives, the species might soon make a comeback.


Northern White Rhino
Photo by Karimi Ngore, CC BY-SA 4.0, via Wikimedia Commons
By Dr Daryl Holland, University of Melbourne - October 01, 2021
This article was first published on Pursuit
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When Sudan, the last surviving male northern white rhino in the world, died in Kenya in March 2018, the species was as good as extinct. The two remaining female northern white rhinos, who are infertile, were doomed to live out their lives as the last of their kind.

Except maybe they won’t be the last.

Science has stepped in with a possible lifeline for the northern white rhino (NWR) and other critically endangered large mammals, according to new research published in Nature Communications.

An international team of researchers using assisted reproductive technologies (ART) has combined eggs from the southern white rhino (SWR) with the cryopreserved sperm of a northern white rhino to create viable embryos and embryonic stem cells.

There are five steps needed to get to the stage where we see a live birth of a hybrid northern-southern white rhino, and Professor Marilyn Renfree, from the School of BioSciences at the University of Melbourne, who was part of the team that developed the embryos, says the first step - harvesting eggs and sperm - was one of the most challenging.

Based on the lack of males, sperm would seem to be a major stumbling block, but forward-thinking researchers had already collected and stored sperm from four northern white rhinos.

“Over the past few years, the sperm from three bulls was sampled and put in cryopreservation. Samples were also taken from Sudan after his death and frozen,” says Professor Renfree.

It was the eggs that were more difficult to collect. Professor Renfree says the key to the project was new technology developed by Professor Thomas Hildebrandt, who’s based at the Leibniz-Institut in Berlin, that for the first time allowed collection of eggs from the ovaries of rhinoceroses.

“He designed an ovum pick-up (OPU) device. This has never been done before with such a large animal,” Professor Renfree says.



The next step in the process was bringing the eggs to maturity, which was done under laboratory conditions, in much the same way as the eggs of many other species, including humans.


“Rhinos are very large (2,000 kg on average), so they have a reproductive tract that is very hard to access. Professor Hildebrandt developed a 150 centimetre-long OPU device to guide the needle to the correct place using a trans-rectal route.”

“They showed that oocytes can be repeatedly recovered from live females by this trans-rectal ovum pick-up, matured, fertilised by intracytoplasmic sperm injection (ICSI) and, for the first time, developed to the blastocyst stage in vitro.”

The device developed by Professor Hildebrandt, who is also an Honorary Professor at the University of Melbourne and lead author of the paper, is currently awaiting patent approval and could also be used to collect eggs from other large mammals.

The southern white rhinoceros is a subspecies of the white rhino and its population is currently rated as ‘near threatened’ by the IUCN Red List of Threatened Species, with about 21,000 individuals remaining.

It is also resident in several zoos around the world. Professor Hildebrandt and his team were able to collect viable eggs from both southern and from the remaining two female northern white rhinos.

The next step in the process was bringing the eggs to maturity, which was done under laboratory conditions, in much the same way as the eggs of many other species, including humans.

Step three is the in vitro fertilisation of the egg with the sperm. Understandably, given the lack of living subjects, the northern white rhino sperm were not the highest quality.

“The northern white rhino sperm, when they were thawed out, were not very good and had to be activated by an electrical stimulus,” says Professor Renfree.

Once fertilisation occurred, forming a zygote, the team stimulated the growth of the zygote for between seven and twelve days, to the developmental stage called a blastocyst – at which point it is ready to be implanted in the uterus.



Now that Professor Hildebrandt and his team have perfected the technique for egg retrieval from rhinos, they have started work to produce a pure northern white rhino embryo.


“The SWR and SWR x NWR hybrid embryos created by the team led by Professor Cesare Galli, who’s the senior author from the Italian reproductive laboratory Avantea, were very high quality and the stem cells created from two of them expressed all of the genes you’d expect them to express,” says Professor Renfree.

Two of the blastocysts have now been cryopreserved and these frozen embryos could soon be implanted into a southern white rhino surrogate to produce a baby hybrid rhino; preserving at least some of the unique genetics of its northern cousin.

Professor Renfree says the stem cells could hold the key to the survival of the rhinos, and other endangered species.

“The embryonic stem cells which are viable are potential candidates to create artificial gametes, both eggs and sperm, using a technique now being developed in mice.”

“If we could create a protocol for creating rhino gametes from stem cells, this is the most promising way forward.”

Now that Professor Hildebrandt and his team have perfected the technique for egg retrieval from rhinos, they have started work to produce a pure northern white rhino embryo.

“The team is going to harvest additional oocytes (immature eggs) from the last two female northern white rhinos who are currently in Kenya,” she says.

“They are infertile and never produced offspring, but they do have oocytes and these could be grown up in culture.”

She says this research also has the potential to help other large mammal species.

“This is a proof of concept project. These techniques have the potential to help the other endangered rhino species, including the Sumatran rhino and the Indian rhino and and other large mammals such as the Gaur, a large Asian cow that is also at risk of extinction.”




This article is republished from Pursuit under a Creative Commons Attribution-No Derivatives 3.0 Australia (CC BY-ND 3.0 AU) license/Title and subtitle have been reworded.
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