Ahead of the 9th World Research Congress of the European Association for Palliative Care, Professor Russell K Portenoy gives a glimpse of the Vittorio Ventafridda Lecture that he will give in Dublin on Thursday 9 June 2016.
When asked to review the evidence pertaining to palliative care services in the US, I initially assumed that I would look anew at the emerging clinical trials literature and define a straightforward ‘research gap analysis’. Knowing that randomised trials have been appearing in the literature, I thought that this was a chance to get up-to-date using the highest quality evidence.
But a quick perusal of the literature led to a realisation. Palliative care in the US is emerging in a way that mirrors our highly complex and fragmented health care system. The real challenge was not to describe the evidence, but to interpret it in relation to the system itself.
This could be a thought experiment: A literature search identifies an American paper entitled, Palliative Care Service: Evidence from a Randomized Trial. If the design and methods were rigorous, what would the reader want to know to understand the impact of the findings on health care?
First, was the ‘service’ evaluated in this trial a ‘specialist’ programme or not? If so, was this defined in terms of the expertise of care providers, the existence of a team, or the range of services offered? There is no one definition of specialist palliative care in the US, and hence, no one service delivery model could be simply assumed to reflect the precepts of specialist care.
Second, if the service was a specialist program, where was it situated? Was it hospital-based, nursing home-based or community-based, or was it based more narrowly in the Emergency Department, Critical Care Unit, or ambulatory practice? Or could the service be defined better by health care system or payer? Was this a study of hospice, the largest provider of specialist palliative care in the country, or was it palliative care in an integrated health system, an ambulatory care (outpatient department) network, or some other type of provider organisation? Was the payer the government, the hospital, or a commercial entity?
Third, what was the primary intent of the service? Did the study evaluate processes and outcomes associated with end-of-life care, or was it intended to evaluate early referral and long-term specialist involvement? What diagnoses were allowed? Was the model predicated on the assumption of primary care by the specialists, or was it consultative?
Fourth, how generalisable were the outcomes assessed as ‘metrics of success’.
Palliative care is focused on the relief of illness burden, a multidimensional construct, and the specific elements measured to assess it must be analysed to determine the extent to which the data can be compared across studies. This is true wherever the study is done. In the US, however, studies often also measure economic outcomes, and when these are used as the primary endpoint, the outcomes related to illness burden may be evaluated in underpowered secondary analyses. As a result, it may be difficult to compare US studies with others even if there is overlapping measurement of illness burden dimensions.
This US-focused thought experiment suggests that a critique of research quality provides relatively little insight into the complexity of the system that has been evolving over decades to provide specialist palliative care for seriously ill patients. Although studies are appearing and the science is improving, a review of the data in terms of the US landscape of palliative care reveals the enormous amount of work left to do.
More about the author . . .
Russell K Portenoy MD is Chief Medical Officer, MJHS Hospice and Palliative Care and Executive Director of the MJHS Institute for Innovation in Palliative Care and Chief Medical Officer of MJHS Hospice and Palliative Care. He is also a Professor of Neurology at the Albert Einstein College of Medicine, USA.
Find out more in Dublin . . .
Come along to Professor Portenoy’s plenary lecture on Thursday 9 June at 10h50 at the 9th EAPC World Research Congress in Dublin or join all the conference activity on Twitter @EAPCOnlus – our official congress hashtag is #eapc2016irl
Vítejte v Dublinu – 9th EAPC World Research Congress, Dublin, Irsko 9. – 11. června 2016, sledujte nás na Twitteru @EAPCOnlus – náš oficiální hashtag je #eapc2016irl
Bun venit in Dublin – 9th EAPC World Research Congress – la cel de-al 9-lea Congres Mondial pentru Cercetare organizat de Asociatia Europeana pentru Ingrijiri Paliative (EAPC), Dublin, Irlanda 9 – 11 Iunie 2016. Urmariti-ne pe Twitter @EAPCOnlus – hastag-ul oficial al congresului este #eapc2016irl