We hospice CEOs should not stay silent
UK – I’m worried that if I speak out about the change in the law we so badly need, it will alienate trustees, staff and donors.
I am a chief executive of a hospice and I believe that those with a terminal illness should be allowed to die when, or if, they choose to. I support new legislation concerning assisted dying – not instead of good hospice and palliative care, but as well as.
However, a number of my colleagues do feel able to speak out against a change in the law – either because they or their hospice has a particular faith or ethical based objection or more often because they believe assisted dying is inconsistent with the principles of hospice care. This means that the debate about this key topic for our sector is distorted and one-sided.
If the law were to change, it would have major implications for my sector. If a hospice patient were to choose assisted dying, would we assist them, would we allow another service to come into the hospice to do so, or would we discharge the patient because our hospice is against it?
Referral to hospice or palliative care should always be the first response to someone suffering from terminal illness and assisted dying must not replace good care. In many cases I see a truly transformative effect that hospice care can have on an individual and their family’s quality of life. Palliative care can alleviate physical, emotional, psychological and existential suffering. Assisted dying for some people will therefore offer choice and control over their situation above and beyond what palliative care can offer.
If someone does choose an assisted death then they, and their family, need care and support right the way through the process. Hospices are best placed to provide this continuity of care.
Modern hospice care places a premium on values of choice, autonomy and empowerment. We actively encourage the public to make a will, or choose a funeral song, to raise awareness of the importance of planning for the future and discussing those wishes with friends and family. We work with GPs to deliver advance care planning, and we respect a person’s choice to decline treatment or not to be resuscitated. Allowing more people to die in their preferred place of death is a key target for hospices nationally, because we know most people want to die in their usual place of residence, their home or care home, or in hospice care rather than in hospital. If appropriate safeguards are in place to protect vulnerable people, why would we not want to extend the choice for those that are dying to when as well as where?
There is often a deliberate and emotive attempt to confuse the terms assisted dying and assisted suicide. These are subtly but fundamentally different. People with a terminal illness are not choosing to die, they are already dying. Assisted dying offers an individual with a terminal illness and clear prognosis to have some say in the timing and place of their death if they want it. And, what is likely to be proposed in the bill is restricted to people who are terminally ill with a prognosis of less than six months. Individuals would also be required to administer the medication to end their life themselves.
Hospices in Oregon, US, have come to see the benefits of the Death with Dignity Act, which was passed in the state in 1997. The Oregon Hospice Association position on the issue is that “Oregonians need not choose between hospice and physician-aid in dying. Dying Oregonians can choose both from among the options on the end-of-life continuum of care.”
With opinion polls in the UK demonstrating overwhelming public support for a change in the law, and dying people choosing to travel to Dignitas in Switzerland where assisted suicide is legal, I believe it is time for hospices in the UK to embrace the concept of assisted dying. Instead of arguing against it, I wish we could focus on ensuring that a safe, practical and compassionate option is provided for those that choose it.
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