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Supporting each other through end of life care

Providing end of life care has never been more difficult and it’s vital that services come together to support each other. Here, Sharon Allen OBE, Chief Executive of Arthur Rank Hospice Charity explores ways hospices can help, and details useful resources for guidance.

The statistics of deaths in care homes during COVID-19 are shocking and sad, and those receiving care at home aren’t currently being counted.

One of the great loves of my life was my beautiful little dog, Mollie. A Bedlington terrier who brought joy to our lives for over 15 years, my heart broke when she died. Taking her for a walk was a treat, watching her joy as she bounded, taking exercise, sniffing, greeting and continually being told by people she didn’t know that she was beautiful. She was. Now, limited on how much time we can spend outdoors, taking a walk has a new context, I miss little Mol in a different way. As joy and sorrow so often intertwine, a new pleasure is hearing my neighbours’ dog, who we sometimes ‘foster’, come calling. She comes bounding in and off we go for a walk (letting her family know of course!).

Lovely story you may be thinking, and the point is? The point is, that it was on one such walk a few weeks back, when I took a call from a colleague in the local Clinical Commissioning Group (CCG). They were asking if Arthur Rank Hospice Charity, where I am Chief Executive, could help a local nursing home that was experiencing a high number of deaths due to coronavirus.

The tragedy facing nursing and residential homes and domiciliary care, who are dealing with extremely high rates of death amongst those they care for, has now made national headlines. It’s a crying shame that, yet again, social care must reach such a devastating scale before serious attention is paid.

The answer as to whether we could help our colleagues in the nursing home (and others who have been put in touch with us) was of course, yes. This is part of our role as a community hospice: to share our expertise and experience, skills and knowledge with all our colleagues across social care and health.

We know that not everyone who is at the end of their life needs our care and support; many will die with family, including the care workers who are like family and who have lived and worked with them for many years. Our role is to provide information, advice, guidance and support so that everyone has a good death. It is also our role to support our colleagues who are used to providing high quality care at the end of life, but are not accustomed to facing the unprecedented volume and extreme challenges of the circumstances we are currently in.

Keeping on top of guidance

Over recent weeks, lots of guidance has been provided for the care sector on how to keep people safe and well and it can be hard to navigate it. As you would expect, the first place I would refer to is the Skills for Care website where there is much useful information. Specifically, End of life Care: Support during the Covid-19 pandemic , which is based on the previously produced Common Core Principles for End of Life Care , has links to a range of resources. Their End of Life Care website page has further resources which I encourage care providers to access.

Registered managers are key professionals providing guidance, setting and maintaining standards and supporting colleagues. Now, more than ever, they need active support and Skills for Care has a wealth of support, including its newly launched advice line .

At a local level, Registered Manager Networks and local care provider associations are invaluable sources of support. It is likely that right now managers may feel too busy to join. However, at this time it’s vital that registered managers take some time (and are supported to do so by their organisation if they are part of a larger provider, or give themselves permission if they are an independent provider) to invest in themselves. This is the only way we can ensure we have sufficient energy and resource to continue doing incredibly demanding roles.

We’ve taken advantage of these sorts of support – just before the pandemic broke, a new Provider Alliance for Cambridgeshire www.cambridgeshirecares.org was established. What a timely inception. The weekly Zoom meetings, liaison with the local authority, CCG, Care Quality Commission and local businesses are invaluable for members.

Nationally, The Care Provider Alliance has been working hard and is raising the issues for care providers. Their website is a good source of resources and can help you stay informed with the latest updates.

Hospice UK’s website shares guidance ‘Caring for your dying relative at home with Covid-19’ . Many hospices, including Arthur Rank Hospice Charity in Cambridgeshire, provide Hospice at Home provision to support people who have chosen to die at home and their families. They might be able to support your service too, check with your local hospice about what support they could provide (you can find your local hospice at www.hospiceuk.org/about-hospice-care/find-a-hospice).

Dying Matters , part of Hospice UK, also has resources supporting people, families and services to think about, plan and prepare for when someone is dying, while weekly webinars from the likes of The British Geriatrics Society and Social Care Institute for Excellence (SCIE) cover a range of topics, providing rich support for hospices and our partners, including care providers.

In a blog for Skills for Care , our Matron, Carly Love mentions a toolkit we are working on to support providers. This is nearly complete and includes further links to resources and support, including offerings from Beyond Words, who have produced free downloadable booklets to support people with a learning or communication difficulty. It also includes a checklist for delivering unwelcome news over the phone and advice for having difficult conversations. This will be available on our website soon so check it out.

Managing visitors

An area that both hospices and care providers are finding challenging is how to manage visiting, or rather, the restrictions we have been forced to introduce. The hospice ethos, like care and nursing homes, is to actively welcome visitors, so they become part of a wider family and work together with our colleagues and volunteers. Sadly, we have had to restrict visitors to one member of the close family per patient per day.

We are fortunate that our hospice is a relatively new building and all rooms on our Inpatient Unit (only one part of what we provide) face out on to garden space. This means we can enable other family members to visit and talk to their loved one through the glass doors – it’s not the same as being in the room, but perhaps the next best thing?

We have been able to help support contact between patients and their loved ones in new ways too, thanks to our community’s generous response to our call for iPads, alongside an opportunity to take part in an NHSX initiative to trial Facebook Portals. This means everyone staying in our Inpatient Unit has access to a tablet to communicate digitally with those they love. We know this is no substitute for the ability to be there in person, to share loving touches and kisses, but it is something. We have also offered to share our temporary visiting policy with local care providers so that they can learn from what we are doing.

Caring for bereaved families

One of the services we provide through the hospice is bereavement support for families of those we care for. We know that there is going to be increased need for this type of support for our wider community, including our care provider colleagues. We also know that bereavement in the COVID-19 era is likely to be more complicated due to factors such as feeling disenfranchised; the sudden nature of losses; multiple losses; not being able to be present at end of life, throughout hospital admissions or for loved ones living in residential or nursing care; social isolation before and after the loss; spatial distancing measures; and the likelihood that there will be an increase in mental health issues due to the anxiety provoking context of COVID-19.

The possible silver lining to the situation is that people may be more likely to know someone else bereaved in a similar circumstance, enabling mutual support, and for conversations to happen between them and the wider community, which as a whole is starting to talk openly about bereavement much more.

It is worth remembering that under normal circumstances, only 10-15% of people who have been bereaved require additional support, with the remaining 85-90% managing with the support of family and friends. Although these numbers are likely to change, given the current context of increased risk factors for complicated grief, the potential of community support and community education is still important.

One of our psychologists penned a beautiful poem shared in our weekly bulletin for colleagues; I’ve paraphrased some of this to share here: we cannot take away each other’s pain or fear, we can walk with you for some of the journey until you feel steadier and can find your own way. It is OK to tread water or even reverse, before you feel better, you may feel worse, that is OK, let us hold our nerve and space and go at the bereaved person’s pace. It is true that life will never be the same again and true that time will soften the pain. Let tears fall, let yourself feel, be patient with yourself, it will take time to heal.

‘And remember, love and grief
are inextricably entwined.
Grieve hard, but love fearlessly
And to thyself, be kind’

Sharon Allen OBE is Chief Executive of Arthur Rank Hospice Trust. Email: sharon.allen@arhc.org.uk Twitter: @sharonallenarhc

What new ways are you finding to cope with end of life care? Have you spoken to your local hospice? Feed-back on this article and share your thoughts in our comments section below.

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