In the sections below, we present three themes describing how initial pandemic policy responses contributed to shaping dying at home preferences and care provision.
Shifting end-of-life preferences and awareness
Participants commonly identified increased patient and family preferences for dying (and receiving end-of-life care) at home as an implication of the pandemic context and related policy and practice shifts. For instance, participants described situations where families were moving family members out of institutional care or where patients were unwilling to go to hospitals or palliative care units, in part because of visitor restrictions. In this context, an increased desire and demand for palliative care at home amplified long-standing issues around access to home care. This was further exacerbated by COVID-19 policies restricting home care visits. Participants explained how tension between increased desire to die at home and the lack of home care services could lead to difficult experiences and decisions:
[…] deciding to keep people at home instead of putting them in a facility because they want to see loved ones, but having issues with pain management, and other things they couldn’t do because they aren’t in a hospital.
COVID has possibly created less desire to die in the hospital because of the strict visitation policies […] [and] may have increased desire to want to die at home. […] [But] some of the visits from the palliative care program […] are no longer happening. For some it means they can’t die at home and they have to go into hospital because of the level of care they would have had prior to COVID [is now too high to be met].
Other participants described how restrictive pandemic measures had some unexpected positive implications for palliative care services at home. For instance, healthcare teams had to adopt more integrative approaches to home-based specialist services to avoid transfers to hospitals or other institutional care settings. Participants also mentioned enhanced collaboration between home/community care workers and hospital teams, rapid development of training modules and tool kits in palliative care and pain management for healthcare professionals, implementation of telephone or online consultations, and other additional efforts by different healthcare professionals “to build capacity within our system to keep people at home as long as possible”:
[…] home care and other providers that traditionally would not have been looped in or would not have been as needed to get involved in palliative care […] with a little extra support and different providers stepping in, can definitely provide that great model of palliative care services at home rather than […] rely on institutions – especially hospitals.
Participants talked about pandemic restrictions as requiring healthcare teams to think adaptively and creatively to help more dying persons to stay at home, but simultaneously emphasized that “dying at home is really only feasible if you have 24/7 medical or nursing support […] [and family/friend] caregivers who can actually reliably and consistently meet your care needs” at home.
Some participants identified how increased desire for and experiences of dying at home meant that more people were exposed to already-existing “practical realities of dying at home” (including home-based service limitations):
I think dying at home is this sort of idea that people talk about, but it’s not often talked about in terms of practical realities […] in our health care system that for the first time have been made real for some people […] Sorry, we have this much resource and you are not on the list for that. We are not going to ever say it in that way, but there is a bit of that consciousness now that […] there are some constraints and the pandemic has made that evident.
Other participants described how the pandemic more broadly revealed an existing lack of public death literacy, including awareness about end-of-life care, advance care planning, and grief. Low death literacy contributed to challenges having conversations about death and dying, at a time when there was increased need for these conversations:
[…] those who are experiencing grief in a COVID environment where public health restrictions just restrict so many things… restrict your ability to get together as a family, sometimes restricting their access to the person if they were up in the hospital for the last days of life… funeral rituals, all of those things. So we need public education to help people understand […] the grieving process, because very few Canadians understand it.
[…] advance care planning […] as we saw through the pandemic, there’s not a lot of people that have talked about what their wishes were and then families were sort of struggling without those decisions.
In sum, participants’ insights indicated how pandemic-related policy and practice shifts may have contributed to increased desire to die at home, while service-related changes and other restrictions (in addition to existing realities of limited services and low death literacy) often made it more difficult to do so, even as healthcare teams strove to adapt and innovate.
Making family/friend caregivers and community organizations visible
Participants referred to how the pandemic exacerbated a tension between the essential role of many ‘informal’ care providers and their lack of recognition and support. For instance, they talked about how policy changes were implemented “through a hospital lens”, putting the experience of family caregivers and home care “at the bottom of the list”:
[…] with a very hospital-centric vision, we were worried about having enough beds, about personal protective equipment […] it’s really, really good, but we forgot about the majority of people who are not in the hospital. The majority of people are not in the hospital, they are not in palliative care facilities, they are at home, and we didn’t tend to this.
[…] we completely put [families] on the sideline […] we stop[ped] famil[y] visits, but we authorize[d] the army to go take care of [people in healthcare facilities]. […] we try so much to advocate for the palliative approach, the wholeness, [and] then we put a player who is a stakeholder in it completely on the side.
Early visitor restrictions in institutional care settings both contributed to and revealed gaps in care in those settings, which in turn illuminated how family and friends were assisting dying persons, including instrumental help with activities of daily living and social support. In this regard early restrictions contravened both the palliative care principle of considering the family as part of the unit of care and that of addressing the physical, psychological, social, spiritual, and practical needs of dying persons [
5]. One participant talked about the tension, exacerbated by the pandemic, between holistic palliative care philosophy and the biomedical approaches that guide the development of healthcare policy:
[…] the development of palliative home care policies [is] extremely health-oriented […] We are here in [province], and I am thinking elsewhere in Canada, in a very hospital-centred […] a highly medicalized vision of health, when we know that […] dying at home is not just about having access to a doctor […] it’s really critical that we expand palliative care policy to the psychosocial and spiritual aspects […] palliative care is not just about medical management.
Some participants also explained how the provision of quality end-of-life care at home was directly linked to access to family caregivers:
[…] if we could do better in supporting family caregivers, I think we would see an increase in quality end-of-life care at home and people staying at home […] I don’t think our health system can support people and I think it takes a community.
Two participants involved in the development and implementation of visitation rules highlighted tensions between palliative care philosophy, and more specifically having access to family, and the urgency of quickly implementing measures to contain the spread of the virus:
Of course, the whole question of family caregivers, if we could, we would have done it differently. Since we have a system that is deficient in terms of its capacity to provide care, we must understand that family members are the ones who often fill the gaps, they are the ones who will be mobilized to provide care and services that the healthcare system cannot provide.
The first wave, we learned, was very restrictive, it was very difficult. It highlighted […] the dichotomy between infection prevention and control and palliative and end-of-life care, one was against the other, and we had to correct that. […] [F]or the second wave […] we put in place a significant relaxation of restrictions, to allow people, no matter where they are, to have access to their family.
These participants described numerous complaints and critiques from citizens, media, and community organizations in response to restrictive policies. This was especially prominent in the context of long-term care, and some respondents highlighted how “the fact that [family caregivers] were not able to be present when […] their person was dying in long-term care will have some lasting effects”. Stakeholders in some regions also described how their organizations advocated for government to reconsider visitor restrictions. Indeed, subsequent directives after the first wave were adapted in some regions to recognize some family caregivers as “essential care providers” to allow them to access those settings, especially caregivers of persons nearing the end of life. This may have helped mitigate the most immediate impacts on dying at home preferences that were outlined in the previous section. In a broader sense, participants talked about the pandemic as a call to action to advocate provincially and nationally for caregivers and for home care.
As governments were relying on community organizations to provide more care to people dying at home in the context of limited institutional and home care resources, some provinces allocated additional funding to non-profit hospice and palliative care organizations, including those supporting families providing end-of-life care. Nonetheless, participants mentioned that many organizations still faced financial and other pressures: many events and awareness campaigns were cancelled, donations reduced, and organizations had to lay off workers and limit volunteer engagement. For instance, an executive from a national non-profit noted that “donations have dropped about 70% across the country”. Another executive from a provincial charity explained that “with COVID-19, unfortunately we had to stop our in-home visits […] our volunteering visiting programme.” Pressures on non-profit organizations affected home supports and support for home-based family/friend caregivers, and further aggravated limitations in end-of-life supports related to pandemic restrictions. A government executive talked about how these pressures are related to the funding model for end-of-life care:
Non-profit organizations play an important role in the delivery of end-of-life services. Hospices in [province] are 50% funded by the government and 50% by non-profits. And in the current context, when their ability to fundraise is limited, we have increased their funding. The question is, how much can we really rely on our organizations to provide essential services, given that their funding and the availability of the services they provide are not guaranteed.
In the context of pandemic restrictions and staff shortages, participants also emphasized how families assumed more care responsibilities for dying persons, taking on some tasks previously provided by home care workers. Participants talked about some “family caregivers having to take on the role of being a family caregiver when they didn’t expect to” without having access to adequate supports, which in turn affected their wellbeing (for example, experiences of grief and higher psychosocial support needs that were not met). As such, participants reflected on how the pandemic highlighted the question of the distribution of responsibilities for end-of-life care between government, community, and family:
[…] [the burden of] palliative care is really rested on the loved ones and family. When you get cancer, all the treatments [are] covered, you have a cardiac problem, it’s cared for by the health system. When we are at the end of our life, well then, we are in a collective project […] we ask for community and family involvement that’s really important […] and that also allows some savings for the state, but it’s also as though the responsibility for end-of-life care, in our culture, is a responsibility shared amongst the network, the family and the community, the community organizations. I’m not saying that it’s good or that it’s bad, I just mean that the state has a more limited role [in palliative care] than in other sectors.
Participants talked about shared responsibility as a community strength but also as a limitation with regards to the provision of reliable services and support at the end of life, for instance as community-based services are highly dependent on charitable donations and funding, meaning their availability is not guaranteed. In addition, participants described how, by contributing to and revealing reliance on family/friend supports at the end of life, pandemic-related restrictions likewise contributed to and revealed inequities in access to end-of-life care (and thus people’s ability to spend their last weeks of life at home) for different communities:
[…] it engenders inequities, because, depending on your social network, on your family network, on the strength of these networks, or the resources available or not available in your community, that will make your end of life easy or very, very difficult.
In sum, participants emphasized how policy changes around visitations and home care during the pandemic’s first wave both contributed to a greater strain on family/friend caregivers and community organizations while making their role in end-of-life care more visible across various settings, including at home. Participants also reflected on how the pandemic brought to public attention the question of distribution of care responsibilities and related equity implications.
Challenges in implementing policy changes
Participants frequently spoke of challenges in developing and implementing policy changes given different interpretations of province-wide directives by health authorities and care facilities, depending on their location and available resources. For example, one government executive explained that the government wanted to give some flexibility to institutions, because of regional variation in service capacity. They described how they worked with organizations on a case-by-case basis to authorize more flexible rules where possible, whereas in other settings stricter rules were used:
[When the directive about easing visitor restrictions was distributed], for some institutions, it was difficult to manage; there are some who will take a stand and tighten up [the restrictions] a little more to be able to manage the number of people. […] and [we] authorized things, for example, in more remote regions, with bigger families, if the healthcare organization tells [us] that they can manage it – please do. So, we give some flexibility to institutions.
Such flexibility, which has also been reported in media and in recent analyses [
31,
32], helped some dying persons avoid isolation in facility settings, but also made it “really tough and confusing for family members to know when and how or if they can be at the bedside”. As one key informant explained:
There were many [policy] interpretations, variations, applications in different settings […] [At our palliative care association], we spoke with many people who were saying, can you help us, my dad or my mom or X person is at this palliative care home and they say it’s not the end of life yet, but at this other palliative care home, they interpret it more liberally, yes, he is at the end of life, and so they can accept two people, four people to come visit, they can put a small lounge at their disposal, etc. So, the application of government directives varies from one place to another and it can generate tensions.
This participant further explained how these implementation dynamics can create inequities in access to care:
[Our palliative care association] recently wrote a letter to congratulate the government on the relaxation of these rules to be able to let more people go into facilities so that people aren’t dying alone. But at the same time, we said, look, there is the notion of human and financial resources. Smaller facilities don’t always have enough resources to be able to relax [COVID measures] as well as desired.
More generally, participants contextualized the implementation of pandemic policy changes in relation to existing inequities in access to end-of-life care within each province, especially between urban and remote regions. A priority shared by many participants was for bolstering palliative care resources and to develop services to support dying at home adapted to the realities and healthcare models in different regions. For example, those working in remote regions explained that even if access to “brick-and-mortar hospices” and palliative care physicians is limited in their communities, supporting primary care providers in providing palliative care can help keep people in their home community at the end of life.
In sum, this theme builds on participants’ concerns with how the challenges of implementing early pandemic-related policy changes could have implications for dying persons and their families, not only by contributing to confusion (and hence distress), but also through how efforts to provide flexible rules responsive to local situations may have contributed to variations in how such policy changes shaped end-of-life care preferences as well as access to home-based services in different communities.