Carol Tishelman wants us to talk about death

Text: Cecilia Odlind, first published in the magazine Medical Science 2016.

What will be important to you when you are dying? That is a question that more people should ask themselves, according to Carol Tishelman. She is just starting a research programme called “DöBra,*” integrating palliative care, health promotion and public health. The programme’s goal is to increase awareness of death as a natural part of life, and to help people to give support and stay involved when family, neighbours, friends or co-workers have a lifethreatening disease or are in mourning.

”Those who want to talk about how they want things to be when they are dying should be given a chance to do so. And of course, there are people who don’t want to talk about it at all, and they shouldn’t have to. Some people feel better leaving the details about their dying to others,” she says.

But talking about death with those close to you can prevent many unnecessary problems that may otherwise arise. This might involve issues such as who you want to speak for you at the end of your life, but even about your priorities. For example, is it more important to you to be painfree than to be awake and lucid? Would you rather die in your home or in hospital? Is it important for you to know what happens to your body after you die? ­ese, and other similar questions have been assembled on 37 cards in a Swedish version of the “GoWish” card deck, and is now being tested in collaboration with different patient and pensioner associations. In addition to stimulating discussion about how we and our family members values around death and dying, another of DöBra’s aims is to achieve more equal palliative care, regardless of diagnosis or where in the country a person lives.

”Today, the vast majority of patients who receive specialised palliative care at the end-of-life have some form of cancer - despite the fact that cancer is only responsible for a quarter of all deaths. Access to palliative care is also unevenly distributed geographically. If you compare it to other forms of care, the equality of end-of-life care seems to be lagging behind,” says Carol Tishelman.

But to do something about it, we need to know more dying.

”We know a great deal about what it’s like to die due to certain forms of cancer, as dying is easier to diagnose and predict in these cases. But by improving our knowledge about what dying is like even with other diseases, and what support is then needed, end-of-life care can be made more equal.”

Whilst palliative care needs to be standardised, it also needs to be better individualised.

“We are all different. Who we are and how we have lived also has an influence on how we want to die.”

This is where the GoWish cards come in again. It is easy to postpone conversations about these difficult subjects with those close to you. When Carol Tishelman’s husband used the cards, she was surprised to see his answers.

”He prioritized in ways that I wouldn’t have predicted. And we have been married to each other for over 40 years! It shows how important it is to talk about these things.”

Carol Tishelman had a long career in research. Her overall goal has been to reach an increased understanding of how people experience sickness, particularly cancer, all the way from before diagnosis, for example through screening studies, through diagnosis and up to the end of life. ­e sick, or potentially sick, individuals are central, but so are their families and healthcare providers. In her work with the experiences of patient groups and the people around them, Carol Tishelman has increasingly realised how we are all part of systems.

”If you want to influence and change things for on the individual level, you also have to understand the overall organisation. ­is has meant that I’ve spent a great deal of time trying to bridge gaps between research, education and care, get them closer to each other.”

Carol Tishelman’s interest in the overall healthcare system can be useful in her new position - as professor in innovative care. The mandate of this professorship includes finding new and creative ways of working within the health care services. And even if Carol Tishelman does not yet have the answers for how to solve the healthcare challenges of the future, she is interested in the bigger picture, the overall organisation of the health services. Among other things, this has resulted in a major, ongoing project, where 11,000 registered nurses in Sweden have answered questions regarding their profession.

”With the help of their responses, we hope to understand how we can get more nurses to stay in the profession and more about factors that impact their perception of the working environment. This is important, as we know the link between experiences of the working environment and patient safety is very strong in this professional group. If they feel ok, the care they provide will be good. Besides, it is uneconomical to educate nurses who then leave the profession, so this is something we should avoid as far as possible,” says Carol Tishelman.

The professorship in innovative care is special in that it is funded by an external donation – Investor AB has donated SEK 10 million to the new professorship over a period of five years. It is unusual for professorships within health care sciences to be funded in this manner. The combination of innovation and health and social care research that this position involves is also unusual, and this has opened a number of doors that have previously been closed. Carol Tishelman was recently invited to speak with the steering group at Karolinska University Hospital, and she has been asked to speak at a seminar on the future of health care, organized in March 2015 by the business-oriented daily newspaper Dagens Industri. The Swedish Minister for Health Care will give the opening speech, and Carol Tishelman was asked to conclude proceedings with her thoughts.

”It´s pretty awesome!”

But the task of speaking on behalf of a larger group is also a great responsibility.

”Among other things, I will talk about the outdated hierarchical structure within our health care services. Why haven’t the roles of doctors, nurses and assistant nurses changed more over time? It seems to be that the closer to the patient you are in the health care chain, the less intelligent you are assumed to be. As a nurse, I have seen proof of the opposite many, many times. I believe it’s time to change these structures, for many different reasons. Even family members and patients should have a different status; they should be seen as stakeholders who can be involved with and even drive changes within the health care system, she says.

The word "innovation" has been used a few too many times, in contexts that are slightly too vague for it to have a clear meaning. What does the word mean to you?

“New thinking. And I believe the way to get there is via more interdisciplinary collaborations and collaborations with new stakeholders,” says Carol Tishelman.

And Carol Tishelman practices what she preaches. Her research group has collaborated with architects and designers, ethnologists, statisticians, life scientists, pensioner associations, doctors, midwives, artists – the list goes on and on. Those who know Carol Tishelman and her work see her as a shining example, where energetic outreach is combined with a desire to make an impact, not least in sectors where health care science has not been previously represented. She herself thinks that her unwillingness to automatically follow rules and directions has often led her down new, seemingly inaccessible paths. Growing up in the Bronx makes you thick-skinned.

“It’s like we say: You can take a girl out of the Bronx, but you can’t take the Bronx out of the girl...”

Now, for the first time in her life, at the age of 61, Carol Tishelman has a fixed income for the next five years, as well as funding for all of her projects.

”I never intended to be a researcher, I wanted to become a nurse and work closely with people. And I still get to do that, thanks to all the contact with patients and their family members in the type of research I do. The subject of my work is never a parenthesis in people’s lives. That’s a great privilege, says Carol Tishelman.”

* In Swedish, DöBra is a play on words, literally meaning ’Dying Well’, but also an idiom roughly equivalent to ’awesome’ in English.