Palliative care social worker Dina Szynkarsky on end-of-life communication, teamwork and cultural sensitivity
“We are dealing with end-of-life communication and the important things you want to do and say before time runs out.”
By Devon Phillips. As a palliative care social worker, Dina Szynkarsky helps patients and their family members deal with a broad range of psychosocial, financial and legal issues. Dina considers it a privilege to work within the palliative care team on what she refers to as the really important issues that are part and parcel of whole person care. I met with Dina in her office at the MUHC in Montreal.
Q: What is the path that brought you to palliative care?
A: I have been a social worker at the MUHC since 1998. I started out in nephrology with dialysis patients, which in some ways is similar to palliative care and in other ways different. It’s similar because people are dealing with end-of-life issues because they are hanging on to life via a machine, but different because their end-of-life issues go on for a very long time. I got to know some dialysis patients very well over many years and when those patients said, “I can’t do this anymore, I need to stop”, it would bring up end-of-life issues and would create a psychosocial crisis for the family. This was the clinical work that I found the most fascinating because good communication around end-of-life issues was required. How do you help someone accept that the person in the bed has had enough, that he cannot continue with dialysis because his suffering is too great? I found these discussions challenging, fascinating, poignant, and very important. I worked with a great team and we had interviews with patients and families, and discussed how we would continue to look after them until the end of life. All of those issues opened up a whole new world for me. When I came back from my last mat leave, I was offered the opportunity to work in oncology and palliative care, and I decided to take the challenge and focus on end-of-life more exclusively.
Q: Tell me about your role as a social worker in palliative care.
A: I cover the palliative care unit as well as the inpatient hematology unit. So that’s 32 inpatient beds plus the palliative day hospital. I see every patient who needs a social worker ̶ they can be identified to me by the nurses, the doctors, or someone else on the team. I try to see every new patient who is coming in with either a new diagnosis, a need for a stem cell transplant, or for admission to palliative care.
Q: What is the mandate for a social worker?
A: Our role is quite broad. We are here to assess how patients and families are coping with their illness and that can include anything from helping a patient or a family member struggling with end-of-life issues and letting go, to getting legal and financial affairs in order, or even dealing with time-sensitive immigration issues such as bringing in family members from another country so they can see the patient for the last time. Often people are financially depleted by the time their illness is advanced so we try to get help from private foundations or from government organizations, such as compassionate care leave benefits. We make referrals to food banks and legal clinics, family doctors; the scope of our work is really quite large. And often it’s to offer social support to people who are isolated.
Q: Why would someone be referred to a social worker versus a psychologist?
A: Medical students often ask me, “Why would I refer to you as opposed to a psychologist? How do I know who to use when?” Sometimes there can be less of a stigma in speaking to a social worker, so for people who need somebody to talk to or somebody to share their experience with, and they don’t have any significant psychological risk factors, the social worker can be the person who fills that need. However, if the social worker feels that a psychologist is needed, then a referral would be made.
Q: Do you work with both patients and family members?
A: Yes, and actually our department of social work is unique compared to many other hospitals, in that we provide support and services, not just to patients, but to family members as well. We don’t look at just the person who is in the bed but we look at the impact that this is having on everyone who is close to them. We really try to treat the whole person. When a person comes to palliative care, often what they need is good nursing care but by that point, the family is exhausted. So we do offer support and services to the family members.
Q: So you have a big role with the patients and the family once the patient is admitted and during their stay. What happens when a patient dies?
A: Every week we have rounds and we talk about patients who have passed away. We make follow-up plans including who should provide follow-up. Should it be the social worker if that’s the person who has had the most contact with them, or, depending on what was observed during the admission, should it be the psychologist?
Q: What does follow-up consist of?
A: It can be emotional support. I ask, “How are you doing, how have the last few days been? How are you coping? Have you been able to eat and sleep adequately?
Regarding all the practical aspects of what happens after a person dies, people are in a crisis after they have lost their loved one and they often don’t even know what they should be asking a social worker. Often it’s a question of trying to anticipate their needs and asking them proactively, “Do you have concerns about anything legal or financial? Do you need guidance in planning the funeral? Do you know how to obtain a spousal pension?” And they will often say, “What do you mean?” And then when you describe it a little bit they will say, “Oh, yes I’m so overwhelmed, I don’t know how I am going to navigate that.” So I tell them I can help them. Often, people are anxious about the cost of a funeral and I reassure them that there are ways to keep the costs down without compromising one’s values.
Q: It sounds like you are a facilitator. You let people know there’s a map.
A: This is great work. I feel lucky to be able to do this. Families need this type of help. At the end of the life of someone you love, it is so hard to imagine what life is going to be like in a week or in two weeks. You need someone to say, “These are the things you might want to think about. There is a map and if you need help navigating it, we are here and if you can’t do this now, that’s okay, we will continue to be here.”
Sometimes it’s just sitting down and letting someone cry with you, giving them a place to do that.
Q: Does it take courage to work with people at the end of life?
A: There are moments when I say, “Gosh, this is so hard”, and there are moments where I cry because people touch you in a certain way and you feel for them. On the other hand, it’s great work and it is energizing to know that you can help someone. Social workers in oncology and palliative care have an opportunity to do the great psychosocial work that we are trained to do, in addition to all the other work in the health and social service network.
Q: Are you part of a palliative care team?
A: I’m so lucky to be part of an amazing team. You can’t provide palliative care with one or two people; you need a whole team. We have doctors, nurses, an occupational therapist, physiotherapist, psychologist and volunteers. The psychologist and I will often bounce off each other; he will refer to me and I will refer to him. I might start off by seeing a wife and she has instrumental issues that we take care of. Then I ask, “How are you really doing with what is happening to your husband?” And she’ll say, “I am okay”. Then I ask, “Are you sleeping at night? No. Are you eating? No. Okay, do you have a family doctor you can see, or, would you consider seeing a psychologist?” Sometimes I am the way into seeing a psychologist or vice versa, so the psychologist and I have a good partnership.
Q: There are many different cultures in Montreal. Is cultural sensitivity part of your job?
A: Yes. We need to be sensitive and cognizant about what the comfortable and uncomfortable zones are for some cultures. On the other hand, we cannot make assumptions about what people might or might not want to discuss. So it’s about going in aware that there might be some hot spots and respectfully asking for permission to talk about those difficult topics: “Tell me how you are doing.What are the things you are most worried about? Are you comfortable talking about funeral planning or do you want to leave that for later on?” In some cultures, people do not talk about funeral plans until after the person has passed away because they may have a belief that talking about the funeral will cause the person to die. So it’s important to approach gently.
We don’t have a formula for every culture because that’s never going to work. You can never say, “Chinese people think this way or Muslim people cannot speak about this”, but we can go in with an open attitude. People will often identify what they need, and if they can’t do so at that particular moment, they can call me back when it is appropriate for them.
I have received calls from people three months and six months later, even a year later, to say, “I remembered you mentioned this and now I am ready to look at it, can you guide me?” And I say, “Sure.”
Q: It seems that we want everything fast in our culture, including getting on with life following the death of a loved one. What message do you provide to the bereaved?
A: People often say to me right after their loved one’s passing, “Do you think I should sell the house? Should I go back to work or to school? Or should I quit my job and start a new career?” The death of a loved one can put everything into question for families and sometimes people will re-evaluate their life choices. What we’ll often say to people is, “Don’t make big decisions in moments of intense grief following the death of a loved one. Let the dust settle. Go back to what is familiar in the short term. See what feels right in three to six months, things will become clearer, and if they are not, we can always talk again.”
Q: Do you have enough resources – people and places to draw on and to refer patients and families?
A: For some things, yes, and for other things, no. I think there is always going to be a shortage of financial assistance for families. The changes made to compassionate care leave are a dramatic improvement. It used to be 55% of people’s salaries for six weeks, now it’s up to 26 weeks. But the problem is that not everyone can live on 55% of their salary so people who need to work miss out on that last precious time with loved ones. So while things are better, they are not yet good enough.
Q: Aside from inadequate financial resources, what other gaps are there in terms of resources that would help families?
A: People at home, especially those who live alone, still do not have access to enough resources to be able to stay at home for the end of their life. The CLSC system is still structured in a way that they will parachute home care workers in for an hour or two at time but that person cannot be supervised and kept safe in their home environment for 24 hours a day. This means that people often will have to come into hospital earlier than they would have liked or worse, they will bounce back and forth from home to the ER several times before being admitted.
Some people don’t want to come into hospital while others do because they feel that it’s a safer environment, so we need more beds for them. We need more palliative care beds in the hospital and more palliative care presence in people’s homes.
Q: Do you think our society, including our healthcare system, supports palliative care?
A: I think many people still don’t really know what palliative care is. People have misconceptions about palliative care. But I think that the reason there aren’t enough palliative care resources in the hospitals or in the community is because of the way the healthcare system is funded and structured. Acute care, not palliative care, is the priority. The government puts all the funding into acute care.
Q: What do you tell patients and their families about palliative care?
A: I would say that we have a unit in the hospital where the focus is on comfort care and it’s less medicalized; the goal is to promote quality of life for as long as people are alive. Palliative care is where we look after patients and we look after families, even after the death occurs. There is a whole family around that one person. So this is very different to any other unit in the hospital.