From the heart of a palliative care nurse

Katherine Cullihall has been caring for patients in palliative care since 1986. Her 30 years of experience has equipped her with the wealth of knowledge needed for her research role with the Manitoba Palliative Care Research Unit. Through her work with the CancerCare Manitoba unit, she helps improve the quality of life and ease the suffering of people with life-limiting illnesses, and see them and their families through the many psychosocial challenges that accompany the end of life.

Cullihall is part of a University of Manitoba research team, led by Dr. Harvey Chochinov that developed a program called dignity therapy. The intervention has gained an international reputation such that the team hosts workshops that draw people from around the world every year. The therapy itself is a way of giving people an opportunity to talk about the things that are most important in their life, wishes and dreams, as well as memories. She is also a community moderator for the Canadian Virtual Hospice, a discussion forum that helps to patients in palliative care and their families learn to communicate virtually and with meaning.

On Wednesday, April 6 Cullihall was part of a public discussion on palliative care featuring U of M experts at McNally Robinson Booksellers. UM Today sat down with her to get her professional and personal thoughts on caring for the dying.

How does someone advocate for him or herself or for family members in terms of palliative care?

Probably the most important thing would be to get the knowledge that’s out there, the information that palliative care services are available. That comes through education, it comes through sessions like the panel at McNally Robinson, but also from healthcare providers – we have to be more aware of presenting this to people. Physicians, oncologists, I think sometimes we make assumptions that people know what’s out there, but they don’t.

As a family member or someone who’s nearing end of life, how do you speak to physicians about palliative care?

It’s important for healthcare providers, whether you’re a nurse or physician, to be aware of what’s out there and when this might be appropriate to discuss with the patient or the client. Being aware that services are there – when I look in Manitoba and I see how limited many of the resources are for palliative care – Winnipeg we’re really very fortunate but you go outside the city, not very far and people don’t have the same access to service. You have to talk about it but it also has to be present, you have to be able to recommend people have the option of palliative care.

What’s the role of healthcare providers in palliative care?

We have to be aware of it. I don’t know that you have to be in a particular place to receive palliative care. I think palliative care is really providing support and comfort. It may not be curative in nature but it provides people the ability to have a quality of life and to be treated with dignity and to feel that sense of dignity that their need are being met – physically, emotionally, mentally, spiritually.

Where can people access palliative care? Is it from hospitals or can people have home care as well?

People can have palliative care within their home, which means that a physician or nurse, support workers, allied health come and visit them and provide support that they need up to a certain amount. It can be within a hospital, for example at Health Sciences Centre where they have a consult team or at St. Boniface or Riverview where they have actual units that are dedicated for palliative care, or the Grace Hospice. It can be in the community hospitals again where there’s a consult service. There’s a number of different ways of having palliative care provided for you but you have to be on the program in order to access those kinds of services or someone has to connect those dots for you.

How is that done?

Usually it’s done with a physician referral. You can self-refer as well, then your application is looked at reviewed and assessed.

How do we provide support to people in palliative care?

We all should look at doing things that help to enhance people. To me I think death is not easy and dying is not easy – I don’t know that it ever can be – but if there are things that can make your quality of life better through that, whether that’s through medication and treatment or through dignity therapy, having a document done or being able to talk about who you are as a person and what’s important to you, all those things can improve life.

Family and friends can provide support just by being present, not having all the answers, saying things that might seem really stupid like ‘how are you doing,’ ‘how are you and I’m thinking about you’ – those words are very powerful for the person who is on the palliative care program and for their family. Practically I think offering and doing things that are useful, things like meals and gardens and not forgetting who that person is. Visiting them, treating them as perhaps hopefully as you always have.

How do we talk the dying?

People have told me that they feel that they’re treated differently once they’re given a prognosis. People feel that they’re looked at differently or talked to differently and I think it’s true because somehow we want to protect them or we see them differently and yet people want to be seen just as who they are. I think we should talk to them like we talk to anybody and I found working in palliative care, that it’s the most honest place you can work. There is generally no time for pretending or thinking about other things, it’s down to the nitty gritty about what’s really important in life and often that tends to be your family, your friends. The job you had is nice but that isn’t usually what people want to talk about at the end of life.

Death is so normal, we’re all going to do it at some point or another but we’re so afraid of it somehow or that we don’t know what to say. Usually we don’t but it’s very hard to say the wrong thing.

Can you describe your personal experience?

My husband was a Newfoundlander so he had this crazy sense of humour and his punch lines went on forever but he was also well educated. He broke his neck in Newfoundland when he was 22 and became a quadriplegic so his education was interrupted. He eventually came to the U of M, did an undergrad and then a masters in divinity at Providence. I tell you that just so you have a little understanding of who he was. He was a little different than what for me is a typical palliative care patient.

Over the last number of years he had a number of health issues. He had a stroke, chronic urinary tract infections, a fairly major depression about 20 years ago and bilateral cataract. His heath was really deteriorating and he was aware of that so you kind of make adjustments in your life and he talked about feeling like his body was a carcass. Then last spring, he needed to have emergency gallbladder surgery and then a few weeks later, because of the bilateral cataract, he misjudged a curb in his motorized chair and he fell out of the chair and fractured his femur. That was kind of the beginning of the end.

I think I didn’t realize I was getting ready for this panel discussion how much of a struggle and how hard life was because Henry wasn’t a complainer. I remember sitting outside with him, it was a Saturday, we were waiting for some friends to come and he was outside and looked pale and just didn’t look well and I said to him, ‘Henry I think you’re palliative.’ And he looked at me and he said ‘thank you.’ I think for him that was confirmation that he could take a breather.

I spoke with a palliative care team who were very generous with their time and their options and I think that’s another thing about palliative care – people really need to listen to what all the options are. Sometimes you think you know it all and you don’t and for example, psychosocial clinicians were available for my family – my daughter, husband and myself. Appointments were getting quite difficult because Henry needed to go by handi-transit and when you book handi-transit you usually have to have a four hour window and if you’re not feeling well, that’s a long time to wait. Having palliative care meant that the physician and nurses would come to the house. I remember the moment that the physician came up the front steps, came in the door, sat down and talked with Henry about what Henry’s goals of care were, what his expectations were and I remember Henry telling me what a relief it was and how kind people were. It was good for him to see that from other people.

He was at home for four or five weeks. The hope was that he would be able to die at home but I think in retrospect it was probably best that didn’t happen. Another thing about the palliative care program is that most, if not all medications are covered, which really makes a difference especially if medications are being changed fairly frequently. That can be very expensive and the pharmacies were very helpful in providing us the medications that were needed so that was really valuable.

You also, on palliative care, have access to calling someone in the middle of the night if you need to. The Friday night before Henry died, family from Newfoundland were able to come and visit. It was good that we had that information that things were coming to an end and that if they wanted to see him they should come now. Then on the Friday evening and into Saturday morning pain was difficult to control and I spoke to a nurse and in the morning the nurse came and made arrangements for him to be at Riverview Health Centre, which was also a very positive experience, in the midst of not such a great time in life. The staff were very helpful and we were able to see the same physician who came for the home visits. Henry was probably not alert for much of the last three or four days, not because he was particularly medicated, but it was just part of the dying process and I think he died comfortably. Since that time palliative care continues to be a support in terms of support to my daughter, to me should I need it.

Jack Rach