IT'S PERSONAL
It’s been a while, and we apologise for the radio silence these last months. Our work helping bereaved parents and siblings express their grief in an active and creative way has again become very personal, meaning we have not been able to attend to our community as much as we would have liked. Earlier this year Jane’s brother Richard was diagnosed with a terminal cancer and died in July. His death is now the subject of a coroner’s enquiry as well as an investigation into the care he received while a patient at the Royal Sussex County Hospital in Brighton, East Sussex.
In the six months leading up to his death we both spent many hours supporting Richard and his daughter Esther as we all struggled for an understanding that he had not long to live. Those who have been at the bedside of a dying loved one may know how difficult it can be to have open and sincere conversations about the inevitable. We won’t go into details but dealing with various hospital departments, trying to figure out how best to help Richard come to grips with some pretty contradictory assessments of his condition, made those conversations even more complicated.
ANTICIPATING GRIEF
In hindsight (and the grief books will have told us) we were experiencing an ‘anticipatory grief’. It didn’t feel like that at the time if only because in the tussle between denial and acceptance, denial would mostly win. Hope was still strong. Hope that what in our bones we knew to be true was somehow a cruel fiction. It wasn’t until the last few weeks and after Richard had moved to Martlets Hospice in Hove that calm descended and we came to a true, unequivocal and peaceful acceptance that Richard would soon be gone.
This was so much to do with the difference between hospital and hospice care. Hospitals are about keeping people alive (often at great cost and not always in our best interests but we’ll leave that discussion for another day) – hospices are about helping people as they die. In hospital and even following the eventual prognosis that Richard’s cancer was terminal, the conversation tended towards a vague sense of how best to extend his life and what medical interventions were available to do that. (Eventually Richard was put on a palliative care pathway, but incredibly, this care was only available 9-5 Mondays to Fridays.). In hospice, where there was no clinical regime to adhere to, and Richard could wake and eat whenever he liked, the conversation was led by the simple question “what matters to you?”. As Martlets’ lead hospice nurse Ana Vincente explained the emphasis is on the patient, not on the disease. What is it right now (and this could change from day to day, from moment to moment) that you would like. Every morning, they would start the day with this question. What matters to Richard of course, but also what matters to us his family. For Richard it was to be wheeled out into the garden to enjoy the sunshine, for us it was to have a more frank discussion of the dying process.
The fact that we felt listened to, that the hospice staff (all of them, not just the nurses, but the porters and cleaners and the cook as well) sincerely wanted to get to know Richard the person more than Richard the patient, made a huge difference to the trust and confidence we had to open up those necessary conversations about the end of life. For the first time we felt protected, valued and safe. Even if Richard sometimes still held onto the idea that he may get his life back, we were all so much more relaxed and able to enjoy the moment.
Richard had been Jane’s hero when she was a young girl. But when he was sent away to boarding school, that hero worship and closeness disappeared. As Jane recalls: “He was intense and at times sad and always seemed to be looking for something he couldn’t find, something I can now identify as love. Our mum was depressed and suicidal a lot of the time and we all suffered hugely from the consequences of her illness.” But Richard being the first born suffered most from her disregard for her children and he was always looking for something to fill this void. In his 20’s he became deeply religious, spiritual and a follower of the Divine Light Mission. He travelled widely, drifting in and out of all sorts of projects and adventures. He trained as a Shiatsu massage therapist, found work as a gardener and as a Man with Van, finally settling in Brighton where he seemed as happy as we can remember him.
The emphasis on getting to know the person rather than the disease meant that in hospice, there was more freedom to discuss our fears and anxieties as well as Richard’s ambivalence about his condition. Once all our fears (rational and irrational) had been recognised we felt more secure to question our own qualms and anxieties and yes, even to the point of getting a better idea of what actually happens as people die.Even now Richard was reluctant to acknowledge that he was so seriously ill that his death really was quite imminent. By the time he entered hospice, it had been a good six weeks since we’d been told by the surgeon in charge of Richard’s care that his cancer was terminal, that he had not years but maybe only months to live. But this information had been relayed to us out of Richard’s earshot and given his predilection to find the positive in all things, we were not sure how much he had really taken in if he had in fact been told that he was now on a palliative pathway rather than a curative one.
GOOD COP / BAD COP
As his advocates, his sister Jane and his daughter Esther in particular, we’d needed to know in much more detail what the likely trajectory of the cancer would be and what the clinicians were planning for his care. Why, for instance, was Richard still in neurosurgery rather than being transferred to oncology and/or palliative care? We found we were treading a complicated line between honouring Richard’s complete faith in the NHS’s ability to make him better, and our own knowledge that this wasn’t going to happen. Our health service is under considerable strain, and we can all have quite different experiences of the care that hospitals provide. Good communication with patients and their next of kin is essential if trust in the system is to be maintained. But instead of supporting Richard we found we were spending too much time ‘fighting the system’. Once a surgeon has failed in what s/he sees as their primary duty to keep a patient alive, it seems they can become quite evasive, defensive and obstructive. This may not be the case for all hospitals but having to play ‘good cop/bad cop’ in order get some clarity presented its own emotional challenges, – to the extent that we were losing confidence to really support Richard as he faced such an uncertain future. Note that trust in the system had not been helped by the fact that for the previous four years Richard had been ‘lost to follow up’ meaning that the original tumour in his spine had not been monitored as it should have been.
the coat we wear
“Our death doesn’t just happen to us … it happens to our nearest and dearest as well”. We paraphrase but we learnt this from Dr Sangeeta Mahajan, a good friend, bereaved mother and contributor to our film Beyond the Mask. Grief of course is the coat we wear after our loved one has died. What does it mean to express and share that grief in the run up to someone’s death? How do we manage the pain and the conflict of knowing/not knowing while supporting the ambivalence (not to say disavowal) of our dying relative. What of our own fears, the anxieties, the frustrations, the overall helplessness? Is this all part of an ‘anticipatory’ grief, that ‘in between’ space in which we were beginning to mourn a death that hadn’t yet happened?
Our instinct was to put Richard’s feelings before our own. Or by colluding with his denial were we avoiding the subject? Perhaps putting our energies (and our anger/disappointment) into challenging the hospital felt easier than facing Richard’s death head on. How much this had to do with the already existing family dynamic is a moot point. Jane’s rapport with her brother was not that straightforward and Esther always needed more from her dad than she felt she was getting. This history inevitably influenced the way we each perceived the situation. At times what Richard understood (“I never heard anyone say it [the cancer] was incurable”) seemed to get in the way of Esther’s attempts to impress on her father that she needed him to be more open with her. (“I need you to prepare yourself and to prepare me – I need to know that you’re OK with that”).
Richard was possibly trying to protect his daughter from painful feelings, but the hospital environment, conditioned as it to make people better, precluded any genuine recognition of our different needs.
GETTING TO KNOW THE PERSON MORE THAN THE PATIENT
This situation changed dramatically as soon as Richard arrived at hospice. This was the first time both he and we had heard in an honest and straightforward way from a clinician who had no concern for their own professional status or reputation, that Richard had an aggressive cancer that would inevitably mean he had only a few short months perhaps only weeks to live.
The fact that we felt listened to, that the hospice staff (all of them, not just the nurses, but the porters and cleaners and the cook as well) sincerely wanted to get to know Richard the person more than Richard the patient, made a huge difference to the trust and confidence we had to open up those necessary conversations about the end of life. For the first time we felt protected, valued and safe. Even if Richard sometimes still held onto the idea that he may get his life back, we were all so much more relaxed and able to enjoy the moment. Once all our fears (rational and irrational) had been recognised we felt more secure to question our own qualms and anxieties and yes, even to the point of getting a better idea of what actually happens as people die.
We’re not sure what Richard really felt about his own death except that he didn’t want it to be a ‘horror story’, that he wasn’t afraid of dying, just that he didn’t want to be in any more pain. If what matter to Richard was that he was not alone and truly cared for, what mattered to us was that people didn’t say ‘we can fix this’; neither the cancer nor our grief. What mattered was that we could work as a team to help Richard go from living life to dying. Here at the hospice, we felt part of a process, part of a journey and a place where we could actually make new memories – memories that now help us to grieve Richard in ways that are untainted by our experience in hospital.
Should good palliative care be a privilege?
We’ve done some background research to this question:
The Marie Curie Trust estimated that 90% of people at the end of life need some kind of palliative care meaning that if current trends continue by 2048 more than 730,000 people will die with palliative care needs each year. Not all of these require inpatient care but the number of actual in patient hospice places seems incredibly low. In 2017 The Care Quality Commission found there are 200 hospices in England with just 2760 available beds .
In February of this year an All Party Parliamentary Group report on Hospice and End of Life Care concluded that the way hospice services are commissioned in England is ‘not fit for purpose’ and that funding often does not reflect the true cost of care, estimated at £7,860 million over the next decade. Of this around one third comes from government via the NHS, leaving a possible £5000 million to be raised from donations and fundraising activities. Hospice UK note that the modest amounts of state funding that hospices receive have not kept pace with running costs, that the financial stability of the palliative care sector is at crisis point and a fifth of all hospices being forced to cut services. At Martlets for instance of the 14 beds in their hospice at Hove they only had funding for eight.
In research commissioned by Sue Ryder there is a dire warning that should the independent hospice sector collapse due to lack of funding, the cost to the NHS of providing specialist palliative care is estimated at £834 million a year or twice the amount it currently spends. It also notes that “if someone is in an NHS hospital rather than a hospice receiving palliative care they are less likely to receive the holistic support that people in hospice care receive as the focus would be on pain and symptom management. Also, the care and support provided to families and others, particularly around bereavement, would largely no longer exist.”
If the quality of our death is to match the quality of our life, perhaps it’s time to reassess how our end of life care is funded and put it on a par with our overall health care. As the palliative care doctor Rachel Clarke put it in her book Dear Life, a ‘cradle to the grave’ health service should take responsibility for helping people die in peace.
Thanks for reading
Jimmy and Jane (October 2024)