“Roger is leaving us": caregivers at the heart of palliative care

29 September 2022

“Roger is leaving us": caregivers at the heart of palliative care

She has 40 years of medical practice in the home. The relationships she has developed with caregivers are rich and deep, both in duration and quality. A discussion with Geneviève Dechêne, family physician, member of the SIAD (Intensive Medical Home Care) home medical team at the Verdun CLSC, and instructor in palliative home care.

Roger s'en va

Alain Stanké wrote a letter in which he thanked the team at the CLSC in Verdun that was taking care of his wife at the end of her life. In it, he underlines the “immense devotion” of his “exceptional caregivers”…

A wonderful letter… Mr. Stanké is a man whose generosity is well known. For the past 15 years, we have been offering the services of a home care team that includes a physician, as is being done in the United States and the rest of Canada, but not here. Québec decision-makers chose to exclude physicians from home care. The medication changes every day for the seriously ill… Josette, Mr. Stanké’s wife, has terminal heart failure. We may have to increase the dose, sometimes twice a day, to make her feel good, not overwhelmed, to make sure she doesn’t get water in her lungs. In Québec, the unions have decided that it’s better for these very sick people to go to the emergency room to regulate their medication, even if they have to do this each and every day. People don’t want to spend their last year of life in the ER. They want to live. It’s Josette who opens the door for us. Josette is the one who makes coffee for Alain. It is Josette who leads a normal life, even though she is short of breath and tired. In his letter, Alain talks about how happy he is to be able to live with his wife at home, thanks to the help of a comprehensive team. Why aren’t people in a different postal code from Verdun entitled to this service as well?

In a few words, how would you define palliative care?

It is the care provided during the last year of a person’s life, regardless of the illness they have. Palliative care in the home (or where people live) is a combination of two types of care: care to treat the illness (diuretics for Josette’s heart failure) and low-dose opiates to relieve any shortness of breath. This is very different from palliative care in a hospital setting, where the stay is short, and includes some agony. We work proactively to avoid hospitalization and the emergency room. We provide relief and treatment at the same time. We also visit residences for the elderly, intermediate resources, rooming houses and homeless shelters. Everywhere, except in CHSLDs and hospitals.

The goal is for patients and their loved ones to have the best possible quality of life. Based on your experience, what role do caregivers play in palliative care programs?

They are central to the program! At the Verdun CLSC, we have often been criticized for talking and working more with the caregiver than with the patient! It is not unusual for me to spend two minutes with the patient and 30 minutes with the caregiver. Because the caregiver is the one who is actually providing the care. The worst thing for the caregiver is that the patient is hospitalized and that he or she cannot be with the patient 24 hours a day. We do everything we can to avoid that scenario.

What kinds of challenges do caregivers face when the person they are caring for is in palliative care?

There are two types of caregivers: the close caregiver and the not-so-close caregiver. From the beginning, we try to involve all the family and friends, because if you don’t, it’s all up to one caregiver. An example we see often: the husband takes care of his wife with the help of two, three or four visits a day from the CLSC. Everything is stable and going well. Then the couple’s daughter arrives, who lives not far away, but who has not made an appearance in six months. She notices that her mother has lost weight, that she is weaker than before, and this worries her. The “not-so-close relatives” don’t often come to help because it’s too hard emotionally for them. Sometimes they have mental health problems or emotional fragility that prevents them from helping the ill person or the “close” caregiver. It’s hard for the caregiver to hear the “not close relative” say, “Let’s get her to the hospital, can’t you see she’s sick?!” The regular caregiver is criticized and may feel guilty about something that is natural. If the sick person gets weaker, loses weight and eats less, it is because they are going to die. That’s why we try to involve everyone from the beginning, by organizing family meetings.

What are the needs of caregivers in this situation?

The first need expressed is that of 24/7 medical care. During the end-of-life stage, there are always unexpected medical needs: pain, shortness of breath, insomnia, anxiety … all of which require an immediate response. There needs to be someone with palliative care expertise to call. All caregivers, without exception, test this hotline to ensure that support is available to them. The other need is that their desired level of help at home be respected. The gentle assistance we offer is often refused by caregivers. Bath time? The husband wants to do it himself… A morning wake-up call and personal grooming service? The caregiver wants to do it until the end… People also want consistency in care. So we need to avoid using agencies.

How do we support caregivers so that they don’t despair during this difficult time?

I think we need to encourage them to accept services. The more we are present, the more visits there are (for example, at least one visit per day), the better we are able to identify the needs. If the caregiver is tired, if they need a break, they could appreciate the services provided by Baluchon Alzheimer or the CHSLDs that have respite beds to give the caregiver a break and provide them the opportunity to take a vacation. We have a social worker specialized in palliative care. Caregivers often tell us, “Yes, I’m doing fine; oh yes, I’m doing great; I’m doing very, very well…” And then, all of a sudden, something goes wrong. We know that as long as caregivers are not totally exhausted, they tend to deny their fatigue. The job of the CLSC palliative care team is to consistently act as a “go-between.” “We can give a bath to the person you are caring for during the week. Let us try.” They are offered services before they even express the need, because by then it will be too late. We know that their task is enormous, even more so if they are elderly.

Caregivers have often been with their charge for a long time. How do palliative care teams fit into this relationship? They need to take into account the knowledge, skills and experience of the caregivers…

If the palliative care team doesn’t do this, home care is doomed to failure. What you just listed is the basic requirement. When palliative care is provided in the hospital, this sharing of knowledge between caregivers and the hospital staff is often lacking.

So you train practitioners to be attentive to this knowledge?

It’s more than just being attentive. We consult with caregivers all the time. There is not a single prescription that I dispense without asking the caregiver’s permission. It’s like a restaurant with a menu (such and such a pill, such and such an injection, a bath like this or like that). We propose, we suggest, they choose.

What would you say to caregivers who fear that new people will upset their balance for end-of-life care?

With SIADs, it’s always the same doctor who comes in, except during night shifts. There is continuity. The pivot nurse is not available 7 days a week. So she shares her work with other nurses. It’s not as steady with the home support workers because of the lack of staff, which sees a lot of turnover. Services are often refused because it is not the same person who shows up.

Are there any resources designed for caregivers?

Depending on the illness, yes, there are specialized networks: Baluchon Alzheimer, the Canadian Cancer Society, etc. In the case of cancer, we work a lot with Nova Home Care, a group of nurses who visit patients in the terminal stages of life in Montréal. Nova nurses and attendants also train CLSC nurses and attendants, as well as caregivers.

What approach should caregivers take when the wishes of the person being cared for to die at home conflict with the abilities of the caregiver to support them?

During each visit, we ensure that the caregiver is not overextending themselves and that they are given the help they need. I say “caregiver,” but I should say “caregiver unit.” When I conduct a home visit, it’s not uncommon to have four caregivers present: the neighbour, the husband and two sons, for example. It’s great to see how the family, community and sometimes religious network get involved. We adjust our visiting hours so that everyone is there. We call it “family meetings.” In the rural areas, family support comes more naturally. In urban areas, it’s sometimes difficult. When I call the children of a sick father to organize a family meeting, they are so happy! They tell me, “It’s my dad who doesn’t want me to come see him, he tells me he can handle it on his own and that I shouldn’t worry!” The nurses and I have to challenge this way of thinking: that children don’t care for their parents.

What have you learned from the caregivers and how have they been involved in the development of Verdun CLSC’s Intensive Medical Home Care program?

Everything is based on the caregiver. A home is neither a hospital nor a CHSLD. The caregiver is the captain of the ship, and the pivot nurse helps them steer the ship. This duo “is” palliative care at home. I have 85 patients and everything is managed by phone. Throughout the week, the nurse navigator calls me and puts me through to the caregiver. She might say, for example, “I have a feeling that Roger is leaving us, I can see that.” At the end of life, proximity determines prognosis. The closer you are to the patient, the more you see the end of life coming. The caregiver knows what is going to happen long before the attendant does. The caregiver knows long before the nurse, and the nurse knows before the doctor! This is why, in hospitals, we often have the impression that people die “suddenly”: the chain is affected. The family member can no longer be as close, the attendants and nurses change, the doctor does not make a prognosis.

You are also a palliative care instructor. How do you teach future physicians about palliative care with a focus on the caregiver? Are students interested in this?

For the past 10 years, the Université de Montréal has been setting up teaching units in which palliative care is taught in CHSLDs and at home. Students do month-long internships in medical care, focussing on palliative care, alongside existing teams. In the homes, they spend time with the patient and the caregiver, a few minutes with the nurse. When I arrive afterwards, there is already a quality bond between the family and the resident in family medicine. It’s really quite amazing!

How did this interest in palliative care come about in the course of your career?

Forty years ago, when I first started practising, all the family physicians were doing home visits. Then I found myself alone at the CLSC, because they had all stopped doing it—partly because of the pay—to go work in hospitals. For 12 years, I was the only doctor at that CLSC. Afterwards, I was able to recruit young physicians from this generation who were very open to learning more about home-based medical care. We still have to deal with the obstacles imposed by the Department and my union, which maintain a hospital-centric vision. When palliative care began to develop in English Canada and in Europe, I read and learned more about what was being accomplished. I owe a lot of my knowledge to Dr. André Brizard, a pioneer of palliative care in Québec. He is the one who trained me. 

Interview by Karine Cloutier, Communications Project Manager at L’Appui pour les proches aidants. Thank you to Geneviève Dechêne for her great generosity.

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