Wednesday, June 15, 2011

Interlude: It's not only about Hospital care of the Dying

On Monday I spent an overcast Sydney afternoon in a room with over 50 people from diverse backgrounds considering Innovation and Community based care of the dying.  It reminded me that I need to clarify my view here.  In my pragmatic way I want to improve Hospital based care of the dying by working towards a cultural and systemic change (the Dying Friendly Hospital).  Regardless of that goal Australian society faces the challenge of how to improve community based care capacity.  To do this both the heath workforce and the carer and volunteer community need to explore new and better ways of growing support and capacity for end of life care.

The guest speaker was Charles Leadbeater, an innovative Englishman at the helm of the UK "Dying for Change" report.  At the heart of this report is the position that most people would prefer to die at home, but most don't, and there needs to be new ways of looking at how to change this.

There was much wisdom, experience and enthusiasm in the room which I valued.  Consequently I feel like the black sheep in looking at the problems of community based care, but we all have our roles to play.

It is absolutely desirable to support people to die at home, yet I heard other, unintended, messages from some on the day.  The first message was "dying at home good: dying elsewhere bad".  Anyone who has worked in palliative care services knows that dying at home is simply not a viable option where the caring resources are not available or accessible.  Isolated frail carers, people living alone, carers with their own collection of chronic (or even terminal) illnesses, people who have moved in retirement and have no family or established community links locally, people whose care needs are 24/7 through the dying period.  There have been recent studies that show that when you ask well persons where they want to die they say "home", but when you ask people who have experienced months or years of progressively debilitating illness many of them say "hospital" because of their knowledge of their care burden.  I also noted that while Charles was clearly observing that acute hospitals in the UK are generally not suitable environments for end of life care, he had high praise for UK Hospices.  

The second interesting unintended message was "a person has the right to die at home if they want to".  Many a community palliative care worker has had the experience of a carer agreeing in the presence of the (soon to be) dying person to the idea of dying at home, then walking to the car with the nurse and expressing that they do not want their loved one to die in the house.  There seems to be an implicit assumption among those that believe people should die at home if they want to that the carer / family will also want this, which is simply not universally true.  Preferred place of care is a complex and multifactorial concept because we live in relationships and in an uneven society.

I strongly support people dying at home where that is a shared goal of the carer/family.  I strongly support dying at home where the caring resources can be brought together.  I believe that we do need to look at all the innovative ways we can raise the dying at home rate across Australia.  I believe that end of life care is a social and community concern and does not "belong" to health professionals.  I refuse, however, to accept that a death not at home is "wrong" or has to be a bad experience.  If Australia was to increase the home death rate by 50% the majority of deaths would still occur in hospitals.  We need Dying Friendly Hospitals, both now and into the foreseeable future.

Monday, June 13, 2011

Elements of the Dying Friendly Hospital

More than a decade ago a documented process was developed in the UK to support better end of life care in hospitals (and other) settings.  The Liverpool Care Pathway has been a success in terms of its adoption in the UK and elsewhere around the world.  The problem is though that an End of Life Care Pathway does not, by itself, a Dying Friendly Hospital make.

The essential elements of the Dying Friendly Hospital can be found under these headings: Clinical Practice, Policy & Procedures, Staff, Family / Carers, Community.  The two overarching themes are Culture and Communication.  I will introduce these here and will expand upon them in future postings.

Culture refers to the value set and behaviours evident in the organisation that is the hospital.  To be Dying Friendly the organsation needs to accept care of the dying as a core activity, and needs to value that activity.  Regardless of the entry point (Emergency or direct admission), regardless of the setting (medical, surgical, critical care etc), a collective commitment to quality end of life care lies at the heart of a Dying Friendly hospital culture.  This is "owned" by senior and junior clinical staff, as well as support services such as administration, catering and cleaning.  (Side note - we have many "non-clinical" employees in our busy clinical areas who are exposed to dying and death.  Do we prepare them for that and support them?)

The second meta theme is communication.  The Dying Friendly Hospital is a place where the right information is sought in a compassionate and sensitive manner, and then is documented and referenced in such a way that those involved in care are aware of it.  Further, the dying person and family / carers are not imposed on repeatedly to re-state information already provided.  The flow of information is equally important where agreed rapid discharge is undertaken.

Elements
Clinical Practice
The Dying Friendly Hospital is committed to, and demonstrates, best clinical practice in the care of the dying. This also includes diagnosis of dying and differentiating it from reversible clinical deterioration.  After around fifty years of the modern hospice movement there is ample evidence and consensus on best practice in palliative and end of life care.  It remains puzzling why this is still not universally recognised by a range health care professionals.  


Policy & Procedures
The  Dying Friendly Hospital will have Policy and related procedures in place that ensure timely responses to end of life scenarios.  Policy frameworks, which reflect local Culture, serve to provide guidance for the operations of an organisation.  Advance Care Directives will be identified and incorporated into the plan of care.  Medications relevant to end of life care support will be accessible 24/7.  Where structurally possible single rooms will be utilised.  Flexible family visiting arrangements will be supported.  Rapid discharge processes will be supported where indicated.  


Staff
The staff of the Dying Friendly Hospital will reflect the organsational culture and will have the knowledge and skills required to deliver optimal end of life care within their experience set and scope of practice.  The Dying Friendly Hospital will also have its own Specialist Palliative Care workforce providing consultation services to all Hospital areas, supporting other staff in their provision of care.  Even where a Palliative Care Unit or Hospice exist the majority of deaths will occur in the remainder of the Hospital, making a Palliative Care Hospital Consultation Team an essential service.

Family / Carers
The Dying Friendly Hospital will practice person centered end of life care, and will be sensitive to the needs of the dying person's family / carers.  Communication with family / carers will incorporate the four "Cs": Clarity, Currency, Consistency and Compassion.

Community
The Dying Friendly Hospital will engage in health promotion activities that seek to normalise dying in the community it services, and will facilitate ongoing bereavement support as a health service provision.

More later.

Wednesday, June 8, 2011

The hope of a better future for the dying

It seems that when a thought just won't go away it's time to write.  If it is a good thought, a necessary thought, then it is time to write and share.  Perhaps even shout.

This is a blog about the quality of end of life care in our hospitals.  It is not an exercise in naming and shaming, but rather a place to explore the concept of the Dying Friendly Hospital inside and out.

In Australia about 150,000 people die each year.  Over half die in public hospitals, usually acute care centers.  An estimated three quarters of these deaths are anticipated i.e. not the result of trauma or accident or unforeseen acute pathology.  So around 60,000 Australians die an anticipated death in a public hospital.
Do they die well?  I am not convinced they always do.

The challenge for the Australian health care system, especially the public health system, is to firstly accept that the majority of Australians will die within hospital walls and thus dying is a core business of our hospital system. Having accepted this there needs to be a commitment to improving the quality of palliative and end of life care in each and every one of our hospitals.  Part of the way ahead will be to recognise that palliative and end of life care has been undervalued in many jurisdictions and that it is an area of investment need of equal importance as all the more politically sensitive and/or popular health care areas.

Our hospitals need to be dying friendly.  This involves best clinical practice (of course) but it also involves policies, processes, values and culture.  I have heard of the dying being seen as bed blockers, or of persons being discharged to residential care facilities only to die within 24 hours. These are not the practices of a dying friendly establishment.

There are many elements to being a Dying Friendly Hospital.  I hope to explore them through this blog.

Finally, a disclaimer.  I have worked in and around the Australian Health Care system for 33 years, and in and around Palliative Care for over 20.  These thoughts and views represent a collective synthesis of that experience, and reflect upon no individual hospital.

Thanks for reading.  My goal is to post weekly.