Contributions from IAHPC Board Members

Currency of Practice

David C Currow, MPH, FRACP, Professor¹
Jennifer Tieman, BSc (Hons), MBA, Research Manager¹

There are a number of pervasive myths in hospice and palliative care.

These include:
• There is no evidence for what we do;
• The information available to us is easily found; and
• We are really good at taking new evidence into practice.

Let’s look at each of these in turn.

There is no evidence for what we do

Palliative care has a rich evidence base for many of the key issues that require our attention. While this evidence base is not complete, and it can be uneven in areas, it is expanding strongly over time both in the total number of articles and the reports of clinical trials. Unfortunately, there can also be challenges in assessing the applicability of evidence given that it may not be derived directly from palliative populations, or it derives only from one group of palliative care patients such as those with advanced lung cancer. Having said this, there are rich data to support much of what we do on a day-to-day basis. Although there is evidence, when we confront reality as clinicians and service providers, we do not effectively recognize or adapt the evidence into practice and policy as it becomes available.

The evidence for hospice and palliative care is easy to find

Searching for literature remains a complex skill. While online databases have made the mechanics of searching easier and many items will be retrieved when we search bibliographic databases such as Ovid Medline, CINAHL or Embase, the ability to comprehensively retrieve useful and important literature relies on well developed information competencies. Even in the most skilled hands, up to 50% of papers relevant to clinical practice may not be captured through an electronic bibliographic search. For well meaning amateurs (as most of us are) the challenge is even greater.

The other challenge is that the data are not concentrated in the few specialist palliative care journals or even in a single bibliographic database. Many high quality papers are published in the general medical and nursing literature and are not themed or titled as palliative. As a result, they will not be immediately obvious even when we scan the journals’ indexes. The diversity of journals in which core hospice and palliative care literature is published remains a challenge.

Accessing the literature

Having found the paper, how does one get a copy of it affordably? The World Health Organization has put together a program to enable access for resource poor countries called HINARA. Sadly, this does not provide access to all journals and the level of resources at a national level to qualify for this service greatly limits the scheme’s usefulness. Further, although there are an increasing number of journals that are making their scientific publication available through open access, it is still a matter of finding them and ensuring that the most current issues have been retrieved.

Evidence into practice

The sad truth is that if we are more than a few years from our last clinical exam, chances are we will not change our practice without significant collegial support or incentives that are offered mostly by pharmaceutical companies. Attending conferences, journal clubs and participation in research are surprisingly poor at changing established habits of practice. As such, a rapidly evolving area like hospice and palliative care where the evidence base is expanding exponentially is unlikely to be put into practice without significant generational change.

What are the possible solutions to this?

The most pressing solution is to have resources that can consolidate and synthesize the data that is available. We are probably all familiar with Cochrane Reviews and their contribution to the identification and assessment of evidence. For palliative and hospice care, what is known from the research evidence needs to be readily available.

www.caresearch.com.au is one approach of making evidence available for one’s practice. Content pages dealing with clinical topics are aligned with a related PubMed Topic Search built upon the palliative care filter, a validated search strategy. These topic based searches enable users to link through to the PubMed database and run a real time automated search in this publicly available database. Each time the search is run, it will be expanded to include the new items being entered on the PubMed database. A free full text option enables those without rights to fee paying databases to search for entire articles that are immediately available. This innovation recognises that the knowledge base is dynamic and provides clinicians anywhere in the world who have access to the Internet with the tools to find continuously current information and evidence.

How we adapt this into practice remains an ongoing challenge, but I would encourage you to look at the Finding Evidence section in the CareSearch website and do a search for a symptom that most troubles you in clinical practice using the PubMed Search Topics. You may be surprised at what evidence exists to help improve the care that you offer on a daily basis.

Affiliation

¹ Department of Palliative and Supportive Services, Flinders University, Adelaide, South Australia

David Currow is also on the Board of IAHPC.

Address for correspondence:

Professor David Currow
800 Goodwood Road
Daw Park South Australia 5041
Phone: 61-88-275-1871
Fax: 61-88-374-4018
[email protected]

Assisted Suicide: The “ Right to Die”

Derek Doyle, OBE, DSc, MD, Edinburgh

The debates about Euthanasia, Physician-Assisted Suicide (PAS) and “ The Right to Die” continue in the United Kingdom, as in so many other countries in the world.

The latest development in the UK, as some readers may have heard or seen in the media, is that the Royal College of Nursing (RCN) has balloted 175,000 of its 400,000 members to elicit their views on assisted suicide. They report that 1,200 responded, 49% in favour of assisted suicide, 40% not in favour. The poll also suggests that six out of ten feel that close relatives should be able to assist a loved one to die. Having been opposed to assisted suicide, the RCN states that it is now neither for nor against assisted suicide and neither for nor against any changes in the law relating to it. Recognising how complex are the clinical, legal and ethical issues involved, not to mention relations within clinical teams, the RCN will now set about producing the best advice and guidance for its members.

This development, moving from opposition to assisted suicide to a neutral position, should be seen in its context. The British Medical Association (BMA) remains strongly opposed to PAS. As the law stands at present anyone, doctor, nurse, relative or friend, who assists a person to take their own life, faces imprisonment for up to 14 years. There have not been any convictions, though many have wondered whether relatives who help to make arrangements for a loved one to die in the Dignitas Clinic in Zurich, Switzerland, and have accompanied them there could, in theory, face prosecution for doing so. To date 117 British people, including some high-profile ones recently, have died there as a result of PAS and, according to spokespersons from there, many more are expected.

It is tempting to be critical of a survey which sought the views of nearly half of RCN’s members, but with only a 7% response rate they claimed that the views of its membership had significantly changed. However, one gets the impression in the UK that views on PAS are slowly changing in favour of relaxing the law. How long it will be before PAS is permitted is anyone’s guess. All this should be set against a background of ever improving palliative care provision and professional training, and public awareness of what palliative care can offer. It makes some of us wonder if we have been right to claim that palliative care is the answer to those who would legalise PAS. Can we learn anything from these recent developments in the UK?

If media reports can be believed, it seems that many who have travelled to Switzerland have not been terminally ill but were suffering from chronic life-shortening conditions which have inexorably eroded their independence and it was this “ becoming an increasing burden” that was the proverbial ‘last straw.’ For some patients, it may not have been just their dependence on loved ones, but also the sense of being a financial burden on the state in its present financial crisis. What this writer is most anxious about, in relation to the RCN survey, is what lies ahead when nurses in favour of PAS must work alongside doctors opposed to it; how sympathetic will such nurses be when their patients are offered the best palliative care available, whether in hospital or in the community and, perhaps more to the point, how will these nurses react when one of their patients might benefit from palliative care but is not offered it? Dare we ask if some of those now “not opposed to assisted suicide” cared for patients who might have benefited greatly from palliative care but were never offered it?