Euthanasia: A limited way of looking at end of life care

The cyclical peaks in discussion around the pros and cons of euthanasia laws around the country have been marked by the predictable, the passionate, and the intensely personal.  As it should be, for the ideas around our own dying, and the myriad experiences surrounding the death of family members and friends, are powerful in a society that largely avoids the topic of death.  It is unfortunate then that it is only around this “debate” that this discussion seems to occur, for as emotive and compelling as it may seem, euthanasia is a very small part of the wider end of life care discussion that goes unexplored. 

Advocates of euthanasia create certain impressions with their arguments that need to be examined if a common language is to be used in any end of life care discussion.  In talking about overseas examples both physician assisted suicide (Oregon) and voluntary active euthanasia (The Netherlands) are spoken about as being the same.  While the result is similar, the party administering the final medication is significantly different – the individual themselves in one, an external third party in the other.  These models need to be kept distinct in this discussion.

Proponents often welcome examples from across a range of health conditions to lend weight to their position, yet neither of the above two models would apply for persons with advanced dementia who have lost the capacity to give consent to such an action.  With Dementia now the third leading cause of death in Australia how will this group best be helped during their end of life phase?  This touches on the issue of who will use any possible future euthanasia or physician assisted suicide law.  Many proponents acknowledge that it is often about having the option (for themselves) that matters, that a "right to die" principle is paramount.  In the Netherlands the number of persons who used the euthanasia option in 2010 was less than 3% of all deaths.  In Oregon in 2009 the percentage of persons who died under that model was less than 0.2%. 

The euthanasia debate often finds Palliative Care cast in the role of the alternative strategy, and this is not how many Palliative Care clinicians see themselves.  A range of views can be found in this group as in the wider community, though the majority of these professionals, who encounter death often daily and who seek to make it as comfortable as possible, remain concerned about legalisation of voluntary euthanasia for a host of reasons.  It is inappropriate for proponents of euthanasia laws to cast those with a different view merely as religious ideologues.  Many palliative care clinicians opposing these laws do so based on their long experience of caring for the dying, and the complexities they have witnessed, rather than any religious world view.

In saying that the euthanasia debate is a limited end of life care debate I would in no way disregard or diminish the views of those on both sides who participate.  The "debate" is a distraction as it hides the question of who will best care for the estimated 31,000 persons in NSW who will have an anticipated death this year, and the next and the next.  The intensity of the euthanasia discussion is inversely proportional to the general level of discussion about end of life care as it would apply to the 30,000 plus persons who, based on the Netherlands figure would not follow (or be able to choose) a euthanasia option.  

However, this debate is valuable in that it provides a moment when the true state of Palliative and end of life care services might be made visible.  NSW has under invested in palliative care services for decades.  Last year’s report into Palliative Care in Australia by the AIHW shows NSW to have the lowest ratio to population of Palliative Care Physicians of the mainland states;  the third lowest ratio of palliative care nurses (after Queensland and the ACT), and has had a 14% decrease in palliative care units in public hospitals.  Palliative Care services have never had their historical cancer funding model amended to support the up to 35% growth in demand for palliative care support from persons dying from non-cancer conditions other than AIDS.  Palliative Care NSW estimates that at least $25 million additional dollars annually are required to address these gaps and to permit specialist palliative care service to play their appropriate end of life care role in this state.  If additional palliative care beds are required that figure jumps accordingly.

My plea is this.  After this round of euthanasia law discussion and activity has settled don’t walk away.  Regardless of your view, bring some energy and attention to the palliative and end of life care services that need to be available for all of our dying population.  If the quality of care at the end of life matters to you, agitate for better palliative and end of life care for all, whether they die at home, in a hospital, a hospice or an aged care facility.  NSW has much ground to make up.

59,864 NSW Citizens but does the Media Care?

Just a short post (I think).
The amazing work of Yvonne McMaster and her helpers / supporters resulted in 59,864 signatures collected  on a petition calling for more resourcing for Palliative Care in this state (see previous post).
The Hansard record is here

This was a record for a petition presented to the NSW Parliament, a matter noted by a number of speakers.
How did the main media in NSW respond?
No mention on the NSW ABC News site.
No mention in the Sydney Morning Herald (once called the journal of record but now sadly very much not so).
Little other pick up.  Instead we were treated to stories about Bert Newton's pending cardiac procedure and news of a clinical trial underway to look at the use of cannabis for pain management. At least the second one was palliative in effect.

The media struggles with  reporting on Palliative Care in general, that is understood.  However, to ignore a record petition, to not ask what is wrong that all these people are concerned, to not put the government's response under the microscope.  Sad, and possibly a failure.

The Palliative Care community also struggles with the media, and the politics of health funding.  Despite the bad deaths and poor end of life practices we encounter every week we do not play sensationalist shock / horror headlines.  The reason is that Palliative Care clinicians, perhaps more than any others, recognise that there are people in deep grief who do not deserve to be imposed on, despite what we might think about the sub-optimal care their loved one received.  It is the personal nature of the dying context that restricts us.

Thank you Yvonne, and thank you to whichever of our politicians are listening.
There is still so much to do, so much lost time to make up.

NSW Parliament Debate November 2012

Today the NSW Parliament will debate Palliative Care provision in response to a petition that, at the time of writing, had collected more than 58,000 signatures across the state.  Not quick clicks on an advocacy website but real signatures from concerned citizens.  The Minister for Health is expected to respond positively and speak to the newly released NSW Government plan to increase access to palliative care 2012-2016 and also point to the extra $35million that has been promised over four years.  On the face of it, this must be evidence of a government listening to its people and responding.  Surely the Palliative Care Community will be pleased with this.

The exact use of this “new” money is yet to be seen, with the closing date for proposals being early January.  However, the language around this funding has centred on filling gaps in community palliative care provision, and especially initiatives that will support home deaths.  Like several other Health initiatives of recent years, hospital avoidance is a key theme.  Again, this cannot be lightly dismissed as there are certainly inadequate resources committed to this purpose and the community will rightly applaud such an initiative. 

Of course, this sets up problems for clinicians, peak bodies and advocates who may wish to discuss uncertainties and even deficiencies in the government’s response, for here is a health minister who is more engaged with this issue than many of her predecessors.  Yet, at the risk of seeming ungrateful, words of caution and uncertainty must be spoken for there is a deep concern that the Government’s response is at best incomplete, and at worst a risk to Palliative Care itself.

NSW Specialist Palliative Care services have been historically underfunded .  Specialist clinician numbers are well below national averages, and Specialist Palliative Medicine physicians are very rare outside of the Newcastle to Wollongong corridor.  The Australian Institute of Health andWelfare reports that NSW has the lowest ratio of specialist palliative care physicians per 100,000 population of the mainland states and has reduced the number of hospice (palliative) care unit in public acute hospitals from 47 in 2008/9 to 40 in 2009/10.  NSW has a lower ratio of palliative care nurses per 100,000 population than many other jurisdictions.  These figures indicate that in 2009/10 NSW would have needed an additional 22 FTE palliative care physicians and more than 200 additional palliative care nurses to be on an average national playing field , and that is before the particular demographic and health infrastructural challenges in NSW are considered.  The demand for Specialist Palliative Care input for persons with non-cancer end stage conditions is estimated to be up to 40% of all referrals, yet the cancer based funding model for Palliative Care services has not been amended to enable this to be addressed.  A consequence of “advances” in treatment options for cancer and other conditions has also seen an increase the complexity of end of life symptom management for many, and again, palliative care funding models have not adequately responded to this.

In addition to this, more than 40 palliative care positions are scheduled to be lost across the state on July 1^st 2013 when one particular stream of sub-acute funding under the National Partnerships Agreement between the Commonwealth and NSW runs out.  The NSW Ministry for Heath has made clear that the new “$35 million” will not be used to address this gap.  Further, new Cancer / Radiotherapy centres are opening up in regional NSW and there are reports of Treasury declining to fund additional Palliative Care staff to provide service within and to these Commonwealth / State funded initiatives.

It is against this past and present reality that this petition has been achieved, and the concern for many is that the government is overplaying the death at home factor, while not addressing the role Specialist Palliative Care also plays across the NSW public hospital system (where more than 55% of NSW citizens currently die) nor addressing the funding shortfalls for those services in relation to the work they already seek to do in community settings.

By not showing how these needs will be met the government runs the risk of short circuiting its own initiative, as it is a requirement that these new community proposals will have formal links with Specialist Palliative Care Services, the very services that are struggling to meet existing demand and to provide a just level of equitable access to their care, support and expertise.  To attempt to leverage off a crumbling fulcrum is to risk clinical harm and/or service collapse. 

So, while the Palliative Care community cautiously welcomes the intent of this new funding as it waits to see the reality of it, we must also ask when the existing Palliative Care Services and clinicians will be resourced to address the unmet and upward demand that the petitioners have responded to. 

"I don't need your help - I know what I am doing"

Well, so much for posting weekly - sorry. I am still to get back and unpack the headline comments in my earlier post about the core elements of the Dying Friendly Hospital. However I am prompted today to give voice to an example of the problem faced by many specialist consultative services in seeking to create better end of life care.
As captured in the title of this posting, a particular barrier to achieving better end of life care in our hospitals is the belief by some health care practitioners that they know how to do "it" - be it pain control or symptom management or end of life care. Indeed, let me say clearly that there are many clinicians who do know how to deliver a good standard of these. Regretfully there are also those whose belief in their own practice does not match up with best known practice. This group either do not seek the advice or support of specialist palliative care services, or ignore the advice / management suggestions offered when they do ask. What can be more distressing is when different clinicians on the ward become discomforted by what they see as less than optimal care, and try to use the palliative care team to "fix the problem".
It is possible that palliative medicine is the only modern medical speciality that so many practitioners who are not trained in it can believe they know all they need to know to practice it. It is also possibly the only speciality that finds itself being told by others what our practice and service provision should be. The former is a significant barrier to achieving quality end of life care in our hospitals. The latter is symptomatic of the lack of understanding about the central responsibility of our hospitals to provide such care.
We need our hospitals to be safe places for our citizens, who have no other options, to die safely.

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.

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.

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.