Appendix
On dying at home, aged 21. Tom’s story.
Addenbrooke’s, 4 May 2005
STEPHEN
This is perhaps a slightly unusual case presentation for a medical staff round. The patient was a 21-year-old young man with metastatic melanoma: the presenters are myself, his GP, Pippa Corrie, his oncologist, and his parents, Annie and Alan Hargrave. The focus of this session will be the journey Tom, his family and friends, and his professional carers travelled after the diagnosis was made. In many staff round presentations, the diagnosis is the point of arrival; we are taking the diagnosis of incurable cancer as the point of departure.
By way of background, I will start by summarizing the events that led up to admission here. Annie and Alan will take the account on from there, with comments from Pippa and myself along the way, and we will leave five to ten minutes at the end for questions, perhaps questions in particular to Annie and Alan. While this is a deeply sad story, it raises issues that we all meet in our clinical practice, and our aim is to stimulate thought and reflection.
Tom was a 21-year-old single young man, who worked as a baker in Sainsbury’s, and lived at home with his parents, Annie and Alan. His older sister was working as a staff nurse, his other sister had just graduated from university, and his younger brother was taking a gap year working in Cambridge. Apart from teenage acne, Tom was a fit and healthy young man, who rarely saw us in the health centre.
He presented on a Saturday morning in May with four days of headache and two days of diplopia on the left lateral gaze. Neurological examination was normal, with no abnormal eye signs. Privately wondering if this could be migrainous or the first presentation of MS, I phoned the duty neurologist who suggested he came up that morning. He was seen and sent home with a working diagnosis of migraine, and the advice to come back if his symptoms did not settle. The headache became more severe, and he started to vomit, so he was admitted to the neurology ward four days later, where he remained for five weeks, until the diagnosis was finally established.
ALAN
People talk a lot about all the waiting in the NHS. We finally persuaded Tom to go to the emergency surgery on a Saturday morning. He was seen just after 9 a.m., referred here and seen by a neurologist at noon. Our experience was that, when it really mattered, you were there for us. In the subsequent weeks, no stone was left unturned in trying to find out what was wrong with Tom and to treat him in the best possible way.
PIPPA
By the time of readmission, there was evidence of a left sixth nerve palsy, which progressed over the following weeks to complete left third, fourth and sixth cranial nerve palsies. Initial CT and MRI scans of the head, carotid angiogram and CSF were all reported as normal. His persistent vomiting proved difficult to control and resulted in him remaining an inpatient for some weeks during the period of investigation. Tom himself pointed out to a doctor a lump under his arm. This was biopsied. As several weeks had passed, the MRI of his head was repeated and this time showed a tiny lesion in the cavernous sinus. The histology revealed metastatic melanoma and a referral to oncology was made.
ALAN
One downside of Tom’s time in hospital was the constant struggle to control his symptoms of severe headache and vomiting, followed by dehydration. We told different doctors again and again about his vomiting reaction (which he’d had since having salmonella as a child) and that it was hopeless trying to treat him with oral anti-emetics and painkillers, but time after time, he was treated with oral drugs and ended up, after several distressing hours, back on a drip. It’s amazing how difficult it was to communicate that message effectively!
ANNIE
After the diagnosis Tom asked me to inform Stephen, our GP, who immediately arranged to visit us and to go and see Tom in hospital. He conveyed a belief that it should be possible to control Tom’s symptoms so he could come home.
Although Tom, and all of us, really wanted him to be at home, Tom had already chosen to stay in hospital, at least for the duration of the radiotherapy. There had been one failed and distressing attempt to treat Tom from home followed by readmission through A & E. He didn’t want to risk the pain and sickness returning, away from the relatively swift relief available in hospital.
Choice is politically correct these days, but Tom’s choice was based on his difficult experience to date and he, and we, needed support and assurance to see that it really was worth trying again with a palliative care regime in place. Stephen listened to us and encouraged us to believe that the vomiting and pain could be controlled at home. Within a short time of coming home, Tom’s symptoms were under reasonable control, with non-oral alternatives at the ready.
It was a success! I won’t pretend these times were easy, but we were able to be ourselves in our own place and the change in Tom’s demeanour was huge! Dying in your own home is something most people want to be able to do. We are really grateful that it was made possible for Tom.
ALAN
I suppose there is no easy way to break bad news. I think we were part of that popular perception that ‘they can do such a lot these days with chemo- and radiotherapy’. Like a lot of people, we’d been on the internet, made our own diagnosis and thought about the possible treatments. I remember sitting in the side ward with Tom, Annie and his sisters, listening to the doctor telling us that he had malignant melanoma. Isn’t that just skin cancer? Can’t they treat it with laser surgery? So it was a truly terrible shock to discover that here was a cancer that was already inside him, and couldn’t be touched by any known chemotherapy agent. I wrote a poem about breaking bad news. The original is quite a bit longer, but I think you’ll get the gist.
I remember exactly what the doctor said to us.
Blah, blah, blah, blah, blah, blah,
Blah, blah, blah, blah, blah, blah,
Blah, blah, blah, blah, incurable,
Blah, blah, blah, blah, blah, blah.
Yes, I remember every single word.
ANNIE
Actually, despite the terrible shock, we were deeply grateful, over the weeks, for what I would call the ‘compassionate honesty’ of all the doctors. You were not cruel or unkind, but did not offer us any false hopes. In doing so you helped us, and Tom, to do something really vital – to live each day as fully as we could and to prepare ourselves for his death.
PIPPA
We have made progress in improving treatments for a variety of forms of cancer, but despite this, many patients remain incurable. Oncological treatments sometimes cure, more often offer life extension while, hopefully, maintaining quality of life. Initial breaking of the news of cancer is often undertaken my non-oncologists; this in itself can be devastating. However, the will to survive is immense and oncologists have the difficult task of explaining the realistic expectations of treatment, while trying to leave each individual with an element of hope for their future. In the case of metastatic melanoma, no treatment has yet been shown to impact on survival. We offer most patients treatment within the context of clinical trials of new therapies of unknown benefit. The median age of melanoma patients is in the order of 40 years: it is heartbreaking for patients, their families, and also for the doctors and nurses involved in their care.
STEPHEN
It was invaluable to speak to Pippa before I visited Tom and the family at home. I anticipated discussions around treatment options, and needed up-to-date expert advice. It was particularly important for me to know that while chemotherapy was an option if Tom wanted that, no curative treatment was available, nor any to prolong survival. There was a real partnership between Pippa and myself, with speedy communication by letter, fax and telephone. In a recent study that I have undertaken with Cambridgeshire GPs, it was clear that local GPs greatly appreciate a call from the medical team when a major new diagnosis has been made such as cancer, or a patient has died, and that most of these calls take less than five minutes. Perhaps worth taking up as a Trust policy?
ANNIE
Tom did not find it easy to talk about his situation. So it was really important that he always had time alone with Stephen, as indeed he had with his doctors in hospital. His adult dignity was maintained. I could see how easy it would have been for me, as his mother, to revert to a habit of care more appropriate to an infant, as I watched him go through loss upon loss.
ALAN
And Stephen even spent some time with Tom’s mates, helping them to know what to expect, how they could support Tom and what it might mean for themselves. As a result they were able to stick with Tom right through his illness and even came to sit with his body after he’d died – not easy for four awkward 21-year-olds!
ANNIE
Tom remained hopeful for life, but it wasn’t long before it became evident that he was facing his death. It was a harsh time, but in the final weeks he was able to live each day at a time, making the most of the times he felt well enough to participate in the life of the household.
ALAN
There were many different medical faces over those months. Our GP, Pippa and her oncology team, neurologists, surgeons, radiologists, receptionists, community nurses, pain control specialists, physiotherapist and a Marie Curie nurse, and a host of others behind the scenes whom we never met. However, we did not experience Tom’s care as fragmented. There was continuity of familiar faces and a sense of a multidisciplinary partnership – communicating with each other and with us, all with Tom’s best interests at heart.
STEPHEN
Palliative care at home is very much a partnership with the family and lay carers. For Tom, his sister Liz was key, the person he talked to most, and as a nurse even giving PRN IM injections as I had written up. The mates were an important part of his life, and were utterly at a loss to know how to cope with a dying friend, as are most 21-year-olds. With Tom’s consent, I met with them on a few occasions, updating them on what was happening, and making some suggestions on introducing some normality and fun into his life. The other key partners were of course the district nurse team, who visited in hospital and made a point of getting to know him and the family early on, so that they were familiar faces when more hands-on nursing care was needed.
ANNIE
Tom was kept supplied with the drugs he needed. There always seemed to be something for the next phase. He was helped to understand the drugs and was able to control his own medication right up to the last couple of days of his life.
ALAN
Helping Tom to make informed choices for himself was one of the most valuable things you did for us. At least he felt somewhat in control, rather than simply being the object of attention, an interesting case at the mercy of others. It did occasionally even have its funny side, like when Tom went to the loo late one night and dropped his syringe driver down the toilet. Thankfully, lo and behold, the emergency services burst into action and within a few hours he had two new syringe drivers! 24-hour care at its best. You really ought to save yourselves some hassle and make them waterproof!
ANNIE
I found it horrifying to see all the drugs stacking up at home. I hated it, but paradoxically I also valued it. It helped me to experience that my instinct to fight for Tom’s life wasn’t helping him and that collaborating was the best I could do to ease his passage.
ALAN
We were aware, from an early stage, that Tom’s case was unusual and interesting from a medical perspective. It didn’t happen often, but there were glimpses, occasionally, of a look which said: ‘Gosh, what an unusual presentation. How interesting!’ And language. All of us in the family were exposed to a vocabulary which was new to us. Words, which mean one thing to you, may mean something quite different to your patients. This poem is called ‘Seedlings’.
Tiny seedlings.
So small you can’t even see them.
Floating around in a rich, nourishing soup.
Looking for somewhere to land.
A tasty morsel
of nerve
of brain
of armpit
of vocal chord
of liver.
Swimming around.
Eating their fill.
Gorging.
Growing fat.
Eating my beloved son,
Alive.
ANNIE
What for you is familiar technical vocabulary may be slicing into our souls, stirring up all sorts of pain in those you’re talking to. You can’t avoid it but be aware it may be happening.
PIPPA
Doctors are human beings: we don’t always get it right, but we need to be ourselves. We need to be able to say and do the things that come naturally to us, but not be tempted to be defensive and hide behind technobabble: think what it would be like to be on the receiving end of some of the conversations we have; ‘cancer progression’, ‘new growth’, ‘seedlings’, ‘harvesting’ . . . positive words in everyday use associated with a very different picture in oncology. Be honest, always tell the truth with compassion, reach out and make physical contact, don’t be afraid to cry with your patient. Our errors are easily forgiven by patients and families who sense that we really care.
ALAN
Those of us in the family living together with Tom – our task was to do our utmost for Tom, while bearing our own terrible pain at the same time.
ANNIE
As we were different among ourselves, so others will be different from us. There is no typical son-dying-of-malignant-melanoma family. We really appreciated the sense that our strengths were recognized and encouraged and we were shored up in our weaknesses.
STEPHEN
Tom stayed at home from August to his death in October. The week before he died he was still managing to get out of the house. When the end came, it was mercifully swift: he became confused and needed a catheter and syringe driver with diamorphine, midazolam and levomepromazine. As he slipped into a coma, his family sat with him. They were all there when he died.
ALAN
I shall be forever grateful that all of us – Annie and I and his two sisters and brother – were able to be with Tom, in those last days and hours, until he died, in his own bed, at home.
But then, it all suddenly went – the drugs, the special mattress, the syringe driver, the doctors and nurses, our family. Suddenly we are abandoned. Alone.
ANNIE
After Tom’s death: the grieving. The harshest time of our lives. Having been so involved in Tom’s care up to that point, however – having been able to share those last days and hours with him, having been able to care for his body after death – made grieving less complicated. I believe this to have been one major protective factor in preventing long-term consequences like depression, marriage breakdown, alcoholism, sickness and absenteeism and a long list of secondary miseries, which people who’ve lost children are so vulnerable to – and which represent a considerable cost to society, not least the NHS!
PIPPA
As an oncologist, I offer the treatments available, while walking with my patient and his family on a final journey, letting go of human life: that’s an important part of my job, to help address death and the dying process itself. At some point, I too have to let go of him and his family, handing over to Stephen and his community team, and I also will grieve at the news of life ending, yet with some sense of satisfaction in the hope that my limited contribution made a difference of some kind.
STEPHEN
Looking after Tom was emotionally the hardest task I have had since I qualified, if also deeply rewarding. The family took me inside their circle of love and care, and his death was a real bereavement to me. My district nurse colleagues and I found his funeral an important opportunity to say goodbye.
ALAN
Another major protective factor was the invitation to receive counselling at the Arthur Rank Hospice. A referral had been made to the hospice earlier in Tom’s illness, but we did not take that up at the time. Now, after Tom’s death, support was offered to us and also to our kids in Nottingham (though they didn’t use it). Annie and I both had our own individual support, but this was the only thing we were able to do together, and it was of huge value to us in beginning to knit our lives back together.
ANNIE
When we talked over the preparation for today, someone said: ‘We could spend a whole day on this!’ So much more we could say, but our time is limited so I will end by saying that all five of us in the family who survived Tom, all of us can remember him with love and pride. Let us be under no illusion. Tom’s illness and untimely death were truly terrible, but all of us have been able to make major new steps forward in our lives.
ALAN
It seems like a strange thing to say, but I am quite convinced death is not the worst thing that can happen to you. After all, it happens to the best of us! But how we can support each other in our dying – that is really important – and something for which we will for ever be deeply grateful. Thank you all very much indeed.