Unpaid care provided by family and friends is critical to enable patients to remain at home. How the patient and their informal carer, as a unit in the home, feel about dying at home and respond to the challenge of this situation will be key to achieving death at home. The carer may require confidence and new skills to enable them to provide care up to and including the point of death at home. In bereavement, there may be short or long-term consequences of caring to the carer’s mental and physical health. However, there is a concern about medicalising bereavement which is a normal process.
A full assessment of care needs including the whole family/care unit is required. The HAH service fully informs the carer about what might happen in terms of the trajectory of illness and the increasing burden of caring over time. Carers will then know what to expect and can rapidly recognise a change in caring situation from control to crisis. If carer and patient choices are affirmed and supported wherever possible, the carer and patient have an increased sense of control. The HAH service should negotiate a partnership with the carer, including clarity about what can and cannot be provided, and recognition of what the patient-carer dyad wants. Pre-and post-bereavement support is based on relationship and understanding of the situation, and a shared story of caring for the patient. In addition, those not experiencing normal bereavement need to be recognised and additional help made available. This should not rely on self-referral and the timing may be many months post bereavement.
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The impact of all the HAH services, with their various approaches to sustainability, volunteering, integration and coordination, marketing and referral, knowledge, skills and ethos, was ultimately felt in the patient’s home.
During end-of-life care
Hospice at home staff recognised the need to extensively support carers, and some of our case study sites offered specific carer interventions such as support groups and sitting services. Practical carer courses were also found to be useful:
I thought the mobility one was very good, which was teaching us how to use the slidey sheet and how to get people out of a chair … all that sort of stuff…There’s one about nutrition, interesting,… and then there’s another one … about the actual dying process and the symptoms and what to look for and you know, how the process proceeds.
EC06
Communicating with carers was key:
…massive part of our job yeah talking to families because they feel the responsibility …if the agreement has been made that they wish to die at home most people haven’t done it before …we’re there preparing for it so they’re not quite so frightened when it does actually happen. I would do extra visits for that reason, not for symptom management but just to support the family…
XSP01 (CNS)
While wishing to support the choice of their loved one, some carers were anxious about whether a “good death” would be possible in their own home. For these and many other carers, the arrival of the HAH brought a huge reduction in their sense of physical and emotional burden:
I felt a great sense of relief from the very first time they came here…They’re just so compassionate and they were so wonderful with me as well, it was as if I was a patient as well really as far as they were concerned…she explained to me that he was going downhill…And then on the morning that he died, coincidentally, she was meant to come that morning and she just took charge, …she just did everything for me…
MC36
When asked what was unique about the care from HAH, many carers spoke of the professional, competent, caring, and calming nature of the HAH team in which the family could fully trust, providing the space for them to prepare themselves, and spend quality time with their loved one:
…just caring for my dad and I know that’s putting it simply, but because they were, as you might say, experienced, qualified, they could spot any signs, …it’s sort of gave us the peace of mind and confidence that whilst we were there they were more than caring for me dad…
DC11
While for many carers, the “handing over” of care to HAH felt almost like a rescue, for others this was tinged with a sense of sadness that they were unable to continue caring for their loved one without help:
I felt rather sadder than when I had been able to do something like help. I felt I was more of a spectator, and hopefully a comfort, but was unable to physically do anything, but I felt sad that this was the case she needed and I was pretty happy that they had come and were exceptional…
PC58
Nevertheless, for carers wanting a more proactive role in the hands-on care, the HAH often enhanced their sense of confidence and backed up decisions the carer made. Positive experiences of carers also included being able to “double up” with the HAH and undertake care as a partnership with some HAH describing how they would teach carers to undertake care activities. Compared to the other services they may have been receiving, HAH was often characterised by a relationship underpinned by continuity, and in most cases being easy to contact.
For many carers, this relationship was strengthened when extended to the whole family. Indeed, the use of “family” as a metaphor was frequently used by both carers and HAH staff to describe the relationship, particularly in the smaller providers:
…I felt comfortable, almost like a family…you feel cocooned in this world of they’re there to help you and I felt comfortable…
GC18
While seeing the HAH as a temporary extension to the family unit, it was also important to tailor the relationship to the patient/carer dyad, with some couples wanting more marked boundaries to maintain a sense of the home as private.
Most carers highly valued HAH. However, for some the HAH did not meet expectations. For a few carers, this was influenced by home not being the preferred place of death for their loved one, but feeling that there was an inherent pressure in seeing dying at home as the preferred option:
The main thing that I came away from all of this was the concept of, you know, encourage people to do it have this happen in their home and service results you get asked quite frequently, you know, are you happy to die at home and we get asked are you happy for your mother to die or your wife to die at home? And, you know, the natural instinct that question is yes because you feel, you know, you want to be in the body of the family and it’s a nice way for anything to happen…It’s very seductive to say to somebody do you want to die at home…
XC01
This perceived pressure was extended in the view of another carer, by expectations that the HAH would be providing the same level and intensity of care provided in an in-patient hospice, including physiotherapy and 24/7 attention.
Expectations of HAH service delivery were also recognised as a potential issue by HAH providers:
…we have had a couple of comments from families, who said, “we want more“. But, You know, when you’ve had a good service for a couple of days and you suddenly realised, actually, this is wonderful, but actually the patient stabilises and we have to sort of re-evaluate how much care with putting in because this other patients who also need, then they’ll say, “oh, please don’t take it away from us”…
DSP02 (Director of Care)
The majority of the carers we interviewed were realistic about HAH capacity. However, the following quote also demonstrates that earlier support would have been welcomed, whereas many of the smaller providers only provided input in the last few days of life:
…if we could’ve had that similar service right from the start, I know that sounds a bit selfish in a way, …just that unfortunately a lot of organisations just don’t have the capacity to provide, if you like, the service we got at the very end, or towards the end…
DC11
Nevertheless, there was evidence that information about HAH was lacking. This fell into two categories. First, some carers commented that they had little awareness in the early days of how to contact palliative care support staff, and what HAH offered, with detail on the latter being seen as important in reducing anxiety when deciding to care for a loved one at home. This was less likely to occur when carers were already well-networked and knowledgeable about the whole system of care:
…we were very lucky in that our GP is a friend who’s known us for 20 years so, you know, we were very good friends so we did have a lot of support there and also [name]’s oncologist, our daughters went to school together so, again, we had a good solid…
GC04
However, for some even when in the HAH service, they were still not clear on who to contact:
…who the hell am I going to turn to? Have I got to phone the ambulance because I can’t get you out of the chair, do I phone the (HAH), the community lifeline? I didn’t know, in that situation (patient stuck in chair), who I was supposed to call…
EC14
Overall, most carers felt that the HAH had more than exceeded their expectation of care and support. In contrast, only a very few carers received the support they wanted post-bereavement.
After death
One carer described how she felt supported by the HAH after bereavement:
…the lady that came was here for a couple of hours talking it’s always nice, when something happens, it’s not just that’s the end, they’ve gone, there is someone following it up to make sure that things were okay and things are okay.
WC69
Nevertheless, many of the carers we interviewed found it very difficult to move from a relationship with the HAH team as being part of an extended family, to a sudden halt in their visits, almost creating a second sense of loss:
…the one thing I found hard is (husband) passed away, the girls (HAH) left and that was it. Now, you’re very busy at first…we had the funeral we did all the form filling and then suddenly, I’m on my own…
LC29
Carers appeared reluctant to proactively seek bereavement support from the HAH, recognising that the service was already very busy, or not knowing who to contact. Some HAH staff also recognised that while bereavement support tended to be delivered by a different part of the hospice organisation, there may be times when follow up by the HAH team may be beneficial:
I think there are certain patients and families that we could probably go in and see once or twice after the patient has died, and I think they would benefit greatly from that, because obviously they have built up a relationship with us… it’s kind of cut off from that moment that the patient has died.
ESP04 (HCA)
For those who had proactively sought support from the Hospice, there was evidence that the format was not matched to the carer:
I tried last week to go to a bereavement group because they send me mail outs and things, for walking, in [name of] Park. So I tried to do that, but I took my dog, because I wouldn’t want to go walking in a park without the dog, and nobody- I mean …I ended up walking the dog by myself, like… [pauses], … I dunno, I’m not a joiner-in of groups with people.
PC12
The importance of being supported in bereavement by someone who had shared the end of life care journey was summed up by this carer:
[HAH nurse] came after [husband] died. She came the next day or two days later and I think she came once after that but following that they were telephone calls, yeah ….it was a huge difference because I think that makes you feel more comfortable,… you know, they’re aware of what you’ve been through so it’s easier to talk to somebody that you’ve already… that you know that’s empathetic towards the situation that you’re in and that you’ve been through than it is to a complete stranger who you’ve never seen before so, yeah…I think it made me aware or feel that, you know, if I did run into a brick wall at any point, you know, that I could pick the phone up and talk to somebody.
VC09