When my time is up, please put me on the Death Pathway

By Iona Joy 9 November 2012

I’ve been following the media hysteria around the Liverpool Care Pathway (LCP) with bewilderment and dismay.

‘Hospitals bribed to put patients on pathway to death: Cash incentive for NHS trusts that meet targets on Liverpool Care Pathway’ shrieked the Daily Wail (I mean Mail) last month.  The Telegraph was restrained but fierce last week: ‘Concern grows over controversial programme as full extent of payments made to hospitals that hit their targets is uncovered’. Apparently 85% of hospital trusts have adopted Liverpool Care Pathway and at many hospitals more than 50% of patients who died had been placed on the pathway. Shock horror!

But to me the news that patients are being put on the pathway is good news. A well-researched intervention to alleviate suffering at the end of life seems to have been successfully rolled out. And hospitals are being rewarded for offering best practice in care, in place of practices which do little to offer comfort and dignity to the dying.  Although Max Pemberton (Telegraph) and Libby Purves (Times) have since ridden to LCP’s defence, I worry that political damage has already been done and we’ll regret the consequences of  such knee-jerk reactions.

Caring about dying was one of NPC’s first sector research reports – it is a guide to end of life care for donors and funders.

Talking to experts, two concerns leapt to the forefront:

  • people weren’t dying where they wanted to and
  • they weren’t getting the right care once their condition became terminal

We heard horror stories of deaths mismanaged—symptoms left uncontrolled, or worse, aggravated by the wrong medical intervention. We learnt that Bad Things can happen if people with multiple organ failure continue to receive hydration and nutrients—the body can’t cope and fluids and such build up in the wrong places, like lungs. Not good. We also heard how people’s spiritual and emotional needs were ignored.

We were impressed with the hospices we visited and the efforts of national charities such as Marie Curie Cancer Care to address these problems. But between the hospices and Marie Curie nursing body only a minority of dying patients could be reached. More needed to be done.

Two initiatives offered hope of better management of people at the end of life. Gold Standards Framework (GSF), now widely adopted, basically ensured that there are systems in place to manage the months or year so that crises are  minimised, hospital admissions avoided and unnecessary stress and distress removed.

Liverpool Care Pathway (LCP) meanwhile focused on the last few days of people’s lives, ensuring the right pain relief and correct medical management of things like hydration. It put in place procedures for communication with patients and families, to enable choice and understanding. The LCP was painstakingly developed by renal and cancer specialists dealing with dying patients every day of the week—it was not concocted by some Dr Death hell bent on euthanasia. It’s worth reading the consensus document on LCP’s purpose and value and note the signatories ranging from Age UK to the British Heart Foundation.

Our report identified that having proved their value, the next challenge would be to roll GSF and LCP good practices into any location where people died. So it’s disappointing that the successful roll-out of LCP has been greeted with such opprobrium.  I suspect  LCP itself is being confused with general lapses in clinical and nursing practice. I wonder if several things have gone wrong:

  • Cases have occurred  where LCP was applied inappropriately or prematurely, and this has given LCP a bad name. Not the fault of LCP itself, I would argue, and I’d want to hear the clinician’s side of the story in these cases. But if mistakes in application have been made, let’s learn from them—is greater knowledge and training needed on when to diagnose dying?
  • Communication. Are clinicians and nurses following the very strong exhortation of the pathway to communicate, communicate, communicate? It seems many  families don’t understand this business about how removing drips can be much more humane than keeping them in. I wonder if they’d had the pathway properly explained.
  • Are the financial incentives structured correctly so that they are not perverse? All dying patients ideally should be on the pathway, but the trick is to ensure that the patient is actually dying rather than incentivise hospitals to kill people off.
  • Death is still taboo. We must still aim to avoid death at all costs, regardless of pain and misery endured by people kept going by endless medical interventions. But shouldn’t we get more comfortable with it as an inevitability for all of us?

When I die I want to be on the LCP – correctly applied!  Hopefully I’ll be sufficiently compos mentis  to have a say in where and how I die, preferably at home or in a hospice. If there’s a garden, I want to be wheeled out into it. I want my family to be informed about what is happening. I don’t want to be kept alive unnecessarily and uncomfortably. I do want my symptoms to be managed and if there is a trade off between a handful of extra horrible days and a shorter, more comfortable end, I’ll settle for the latter. I want sedation to be minimised while I say good bye and sort a few things out, and then I want industrial quantities of opium. I want the drip out, so I don’t drown, replaced by some ice cubes (dipped in vodka?) to keep thirst at bay. And I’ll leave a modest legacy to Marie Curie Cancer Care in thanks for developing the LCP, and to the hospice for delivering it.