Palliative and End of Life Care – why getting it right is so important

Dr. Idris Baker, National Clinical Lead for Palliative and End of Life Care in Wales
Dr. Idris Baker, National Clinical Lead for Palliative and End of Life Care in Wales

by Dr. Idris Baker, National Clinical Lead for Palliative and End of Life Care in Wales

Are you serious?


“Are you serious about this? Who do you think you are?” the out of hours coordinator asked me. “Sending a man like this home? Asking for morphine for him to go with? A man like this needs to be in hospital.”

The problem was that Bill – he wasn’t “a man like this”, he was this man– didn’t want to be in hospital. He was in A&E, and he was screaming, and he could only tell me two things: he wanted painkillers, and he wanted to go home. He only had these two wishes and he hoped I could grant him both.


Bill’s story


His family filled in some blanks. Bill had advanced pancreatic cancer, his chemotherapy hadn’t worked, and he knew – they all knew – that he was dying. No one had given him any decent painkillers. It had got so bad that they had to bring him to hospital. We had old hospital notes and it all checked out, so there was nothing suspicious about the story. Bill was dying, in pain, and scared. I was scared too, a new young casualty officer facing a long bank holiday weekend, and I didn’t know much but even I could grasp a bit about Bill’s situation.

We gave him some morphine in A&E and he was more comfortable, still alert, talking more easily. This wasn’t an unusually difficult pain. Morphine would do the job. He still wanted to get home but he was calm for now. The problem was that this dose would wear off soon and I wasn’t allowed to give him morphine to go home with. So I could treat his pain, or I could send him home, but it seemed I couldn’t do both. And it turned out the out of hours service couldn’t either because they were a bit stuck in the established way of doing things. What did Bill need? What did I need? All it would take was a system that could let me, or someone, prescribe some morphine and would supply enough to him at home to last him till he died or at least over the long weekend so his usual GP could pick it up then.

Life isn’t always that straightforward. Whether it’s for children or for adults doing good palliative and end of life care needs good teams with a good breadth of expertise to tackle complexity. You need good doctors and nurses, among other things, and you need good pharmacists. They need access to clinical information, to training, access to proper team working so that it’s not a team in name only with a collection of people working in isolation. It has to be a group with shared understanding and shared knowledge working to shared objectives.


Making the most of pharmacists’ expertise


Sometimes you need innovative ways of working, and we have some way to go to make the most of pharmacists’ growing skills. If experience in other specialist fields is anything to go by then consultant pharmacists might just be part of that. Much of it is about getting the basics right, getting them right on time every time. For every person who needs the advanced skills of a consultant there are 100 who need safe timely supply of medications because they don’t have time to live with uncontrolled pain while we get our act together and sort out glitches.

Usually that’s as simple as access to oral morphine and some just in case injections to get out of hospital on Friday night. Simple but not always easy. Ensuring ready access to basic drugs takes some doing. Continuity of supply of rarely used drugs that are suddenly needed in eye watering doses (and isn’t it always on a Friday afternoon?) is harder, a logistical challenge that can only be met with great planning and coordination. But it’s about more than supply. If it’s scores of vials of ketamine and methadone, both for infusion in a 6-drug cocktail, I’m glad to have a pharmacist who can work alongside me to establish whether we can get them all in the two pumps the nurses have at the house (it has to be manageable for them) so that we can get the drugs going with the minimum disturbance to the patient and family. And I’m glad of a pharmacist who can help reassure the less confident: yes, this is something we don’t usually do at home; yes, these doses are 2 orders of magnitude higher than the rest of your patients; yes, you’re right to check if you’re not sure, that’s fine; and yes, this is the right dose for this person right now, and here’s why. This is a man who needs a synthetic opioid because of his unstable renal impairment. That one’s a child who needs doses that don’t look right because kids’ handling of drugs isn’t what you expect if you don’t know about it, which is why there’s an expert doing the advising and the prescribing but here’s the background reasoning. At any level of expertise and specialisation this job needs the right professional development and training and it needs the right information sharing. Asking a pharmacist to help address this complexity without clinical information about the patient and without supporting their understanding of the priorities isn’t going to work.

Bill got one of his wishes. He didn’t get home. He did get pain relief but he got it on a hospital ward where he didn’t want to be and he stayed there until his death.


Making a difference now


All this was a long time ago. I remember it quite clearly. I’m not in touch with Bill’s family but I know they’ll remember it vividly. The ripples from how well we do things at the end of life are far-reaching and long-lasting, and getting it right really matters. Like she’d asked me, who did I think I was? I was just a passing doctor who didn’t yet know enough but wanted to do the right thing. As time passed I realised maybe I could be a doctor who could know enough to make a difference sometimes.

Would we do better now? I really hope so, but we have plenty more to do if we are going to get this right every time. For that we’re going to need the right people with the right skills pulling together. From community providers who know their regulars to specialists in tertiary centres, pharmacists are going to have to be a big part of that. Maybe that means you.

So are you serious about this?


Dr. Baker will be speaking in more detail about his experiences with medicines use in palliative care at the RPS Medicines Safety Conference in Cardiff on November 22. He’ll also be announcing our new Palliative and End of Life Care policy for Wales, which will be published at the end of November.

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