PORTRAITS IN PALLIATIVE CARE
Social Worker Zelda Freitas on the need to reform Residential care and support family caregivers
“Somehow we forgot that the older members of our society are part of us. We have placed them aside and hidden them in long-term care. No one will argue that there comes a time when long-term care may be necessary, but the problem is the way we treat the people residing in long-term care, as other, and not part of us. We need to listen to the people who are actually working in the system and also the residents and their families who are providing love and care.”
By Devon Phillips. According to Zelda Freitas, Social Worker Coordinator of the Area of Expertise on Caregiving at the Centre for Research and Expertise in Social Gerontology (CREGÉS) of the CIUSSS West-Central Montreal and long-time passionate advocate for family caregivers, the advent of COVID-19 has amplified problems and care gaps that already existed in caring for people with loss of autonomy, many of whom are seniors. Zelda believes this amplification could represent a golden opportunity for healthcare reform using an integrated palliative care team approach which includes caregivers and family members front and centre as partners in the care.
Q: Tell me a bit about your background and your current role at the CIUSSS Centre-Ouest de Montreal.
A: My background is as a social worker and supervisor working in the CLSC for over 25 years. I spent most of my career supporting people who are experiencing loss of autonomy as well as in palliative care, to remain at home. The population I have worked with is mostly seniors and their families, but of course also younger adults with chronic illness.
Currently, I am working as the Coordinator of the area of Expertise in Caregiving of the CREGÉS at the CIUSSS West-Central Montreal. The role of the area of Expertise Coordinators is to bring the knowledge of practice to the researchers and the researchers consult with us to make sure their research is relevant to practice. So I collaborate on research projects, and am involved in the development of tools and training for practitioners, all related to social gerontology. Because my area of expertise is related to caregivers and caregiving, I work closely on projects with topics related to caregiving like countering older adult mistreatment, palliative care and healthy aging.
Q: What are some of the biggest challenges in caregiving currently?
A: There is a lot going on given COVID-19 but you know, it’s not so different from before the pandemic. The issues are similar, but with COVID-19, they are amplified.
One issue right now is caregivers not being able to be with the person they normally care for, if they are in long-term care, as well as the issues of grief and loss. Isolation is also a big concern. Caregivers who may have had some support services from the CLSC and their families before, may have found themselves further isolated as the care may have been receiving may either been stopped or reduced for a number of different reasons. So when they are told to self-isolate at home if they are over the age of 65 or 70, these seniors may be self-isolating with someone who is 70, 80 or 85, and so we have an older person taking care of an spouse perhaps with advanced illness. Those are major challenges under normal circumstances but when you have a pandemic, it’s even harder without their support network.
Q: What about the caregivers who are taking care of someone who is dying at home? Are there particular challenges in this circumstance?
A: With the pandemic, there is an even greater need to make sure that caregivers, defined as anyone that is significant to the life of the person with the illness, are part of the care team. We need to address both the needs of the person who is dying and the needs of the caregiver, both up front and into the bereavement phase.
There are many challenges for caregivers, especially for those looking after someone who is dying and without the proper supports, the outcome may be detrimental to the health of that caregiver. We need to talk to caregivers about what their wishes are for themselves and for their loved ones at end of life. For example, we are not doing a good job of preparing individuals and their caregivers/families for making difficult decisions, and this has put a strain on healthcare providers who turn to families for guidance. More emphasis needs to be placed on advanced care planning.
Q: How are we doing in Quebec to address the needs of caregivers?
A: One major thing is that caregivers are not recognized as part of the care team. They are invisible. We have seen this very clearly in long-term care. Caregivers make sure the person is eating, drinking enough fluid, and once they could not enter into the long-term-care centres, all that burden fell on the paid aides and they themselves were falling ill, so the whole system fell apart.
In homecare for instance, caregivers are often considered as resources rather than partners. Healthcare professionals are going into the home and asking, “what can you do, what resources can you provide so that your family member can stay at home?” What we do less is work with the families, in terms of looking at what they are providing now and asking them, “where are your concerns, how can we help you plan for the future?” I think we need to work more on creating partnerships rather than seeing caregivers for what they can do.
Q: Do you recommend collaboration with caregivers as a standard part of a care plan?
A: Absolutely. There is so much we can learn from the principles of palliative care which emphasize working with families and significant others. In other areas of healthcare, it’s not necessarily part of the approach. In palliative care, we are at a more advanced understanding of including caregivers because we know how important they are.
Q: Can you describe the principles of palliative care that would provide leadership?
A: Palliative care is the perfect example of an integrated team approach. We, as palliative care providers, bring specific expertise such as working with families and teaching healthcare professionals how to better work with different disciplines, and that can improve other areas of care, long-term care being one example.
Q: So how do we apply those principles of palliative care in a practical way?
A: If you look at palliative care as an integrated care model, like “The Way Forward” framework developed by the CHPCA (Canadian Hospice and Palliative Care Association), a lot can be done that is not complicated. There are several levels to achieve this. There is the education of professionals in the field at the moment. Another way is through schools. We know that in medical school you may find palliative care in the curriculum but you might not find it for other professions. There is also a change to be made at a societal level. We ignore death and dying, we do not like to talk about it, and even grief is hard to talk about. With COVID-19, we are talking more about grief, which is fantastic. The pandemic is making grief more complicated because people have not been able to be with the person they loved when they died. For people working in palliative care this happens all the time, we are always in the midst of death and dying and caring for people and families. It’s just now more people are witnessing it as well. So, as a society, we have a lot of work to do to make sure that these discussions don’t end with the pandemic.
Q: Do you believe that the research you are involved in will lead to change?
A: For over a year now, colleagues and I have been working on a ministerial mandate that was given to the CIUSSS CODIM and led by CREGÉS to research the types of support currently in place for caregivers as well as the gaps in resources. We know that the Minister of Aging and Caregiving, Madame Marguerite Blais, will issue a caregiving policy in the near future. Our research centre is proud to contribute to this policy which will advance support for caregivers.
There are also a lot of practical and relevant research projects addressing and linking different areas such as caregiving, grief, palliative care, bereavement and aging. For example, Tamara Sussman, professor at McGill and CREGÉS member is currently working on a project on advanced care planning in long-term care. We are also looking at caregiving in the LGBT community, in palliative care, as well as caregiving and intimacy, and the many different social dimensions of aging. I am hopeful that this research will enrich clinical practice.
Q: I understand that you were deployed to a CHSLD (long-term care centre) recently. What was that like?
A: It was a very eye-opening experience. Because my experience is working with caregivers, loss and bereavement, I was assigned to call family members after they had been informed of death of their loved one. I also helped out with distributing meals and feeding, so I was on the floor quite a bit. The CHSLD I was in was considered a “hot” zone. It was difficult to work under those circumstances and I have to say that the staff was doing their best. For me the challenge was the multiple deaths and having the experience of talking to over 40 family members. This experience will certainly stay with me and has pushed me even more into making sure we are doing something to help caregivers with loved ones in long-term care as well as the residents themselves. From my end, I am not letting that go.
About 80% of care that is provided at home is provided by family and friends so this is a huge focus in terms of understanding caregiving. We need to make improvements for caregivers at home, and in long-term care. There is a real need to bring the palliative care approach into long-term care. This has become more real to me after my experience at the CHSLD. The palliative care approach is an important way forward.
Q: Given that many issues about the gaps in the care of vulnerable populations has come to the forefront because of the pandemic, many people are hoping for change but are skeptical that change will actually occur once the COVID crisis is over. What do you think? What can we be doing better?
A: I don’t think it will go back to the way it was. I want to point to the recent front-page article of the New York Times, where the names of a 1,000 people who had died in the pandemic, a lot of them older people, were posted. What really struck me was this key phrase, “They are us”. We need to make major, concrete changes. The onus is on all of us; they are us. We have to make sure they continue to be us and they don’t fade back into the shadows. And that we honour those that have died.
It is also the responsibility for groups such as the Council of Palliative Care, of which I am a member, to continue to promote and educate around death and dying, and to make sure this conversation continues.
Everyone has a role to play, and individuals need to think about their role. It’s not only up to healthcare workers or burdened family members to have to advocate for themselves and for their loved one. I am hopeful. I am also hearing about all kinds of great initiatives in the community as people want to help. We all have to advocate and we have to tap into the collective good will out there.