- Is it the tone of care, the welcome and the cup of tea for every visitor ?
- Is it the interest we show in all that matters to patients and families?
- Is it simply that we involve families in every conversation and decision, as they are the ones who are going to live on with the memories and stories?
- Is it that we are the safety net, plugging the gaps in local services, which are stretched to their limits?
- Is it the army of volunteers who support the professional staff in all aspects of their work?
- Is it that we create a sense of home, but also give the security of round the clock expertise?
- Is it our unwrapping of complexity – there is always something that can be done?
I don’t know if it is any one of these aspects or perhaps all – however I do know that the nature of the ‘attention’ that we give to people seems to matter a great deal. The absolute focus on “what matters to you” rather than “what’s the matter with you.” It is this that can be injected into other settings, way beyond our buildings to ensure ‘hospice care everywhere’.
Maureen Bisognano, President of the Institute of Heathcare Improvement talks about this refreshing focus as ‘flipping’ health care.
Complexity has taken on new dimensions in terms of referrals to our hospice.
So in the last month we have been asked to assess people with a 20 year history of chronic pain and low self-esteem following trauma from amputation where every other pain clinic has failed help.
We are being referred patients on total intravenous nutrition, in their 30’s, who are homeless and suicidal with young children.
We are being referred an increasing number of patients with cognitive decline and multiple co-morbidities who are too sick for a nursing home, too well for hospital and are taking 18 different medications.
So the hospice has become a place of ‘last resort’. Not only a resort with parasols, ice-cream and sunny gardens (we do that quite well!) but also a place to holistically look at complexity, design sustainable solutions with families and offer support to our exhausted colleagues.
No longer is the hospice a place for uncomplicated dying.
This is a real challenge, as many in our community think that it still is. Maybe it should be? But there is often no space at the inn.
Hospital isn’t the place for final days for those dying quietly, without the need for multi-professional teams – but many don’t have an escape route from hospital if the hospice is full.
Home is the place if there is enough formal and informal support…but often there isn’t. We need alternative community models, just as Charles Leadbeater predicted in 2010 in Dying for Change, and we need communities to discover their own capacity to care.
As I muse on the concept of ‘hospice care everywhere’, I find I am lost for words! Many words have been hijacked from palliative care – ‘dignity’ now means choosing the moment of your death, ‘healing’ is no longer something doctors do and ‘holistic’ means crystals and homeopathy to many. So lets reclaim some of those words! Particularly dignity.
I still think that Professor David Roy’s assessment of what ‘dignified dying’ looks like describes my aspirations – he published these in Ethics and Ageing in 1988.
- Dying without a frantic technical fuss to squeeze out a few more moments of biological life.
- Dying without being racked by pain that ties up ones consciousness and leaves one free for nothing and no-one.
- Dying in the presence of people who know how to drop the professional role mask and relate to others simply and richly as a human being.
So hospice should no longer be a ‘last resort’. We know that the creation of an early relationship with palliative care brings many benefits. Increasing number of studies are demonstrating physical and psychological wellbeing, where palliative care is seen as an extra layer of support alongside the treatment phase of an illness. We just need to find the the courage and the words to suggest it.
So cups of tea and complexity describe hospice care well – they are important in equal amounts. If the cups of tea go, then our unique approach will be swept along with the technological advances of medicine, where interventions become more important than relationship. So it seems that the ‘hospice’ approach can be adopted and even injected in other settings – it is no longer about our building, our gardens and our volunteers. It is a way of being with people, a way of enquiring differently.
Professor Atul Gawande, heroic New York surgeon and writer has researched what is important to people as illness advances. His article on how medicine has lost its way, but can find its way back to humanity by simply asking the right questions, is a breath of fresh air in Hospice Care Week. He suggests we ask about peoples understanding of their illness, their goals if time is short, their fears and the trade-offs they are prepared to make. These are questions I’m sure many of us already ask every day, but its different when a surgeon says these are the right questions!
Read it and restore your hope in the possibilities we can bring to our patients and those close to them!