Body, Mind, Soul,
The first estimate of the need for palliative care in New Zealand was produced by the Palliative Care Council in 2011. Three estimates were produced, a minimal estimate based on a list of conditions recorded on the death certificate, a mid-range estimate that included hospital admission data, and a maximal estimate based on a longer list of conditions. The report established, for the first time, the number of people who might benefit from palliative care in New Zealand. Overall, combining adults and children, the mid-range estimate in 2006 was that 56.3% of all deaths were amenable to palliative care.
Subsequent to the publication of the HNA1 report in 2011, there have been a number of new papers and revised thinking on the conditions to include in estimates of the need for palliative care. A paper by Murtagh and colleagues has been particularly influential as it compared the results obtained from the earlier Rosenwax approach (the basis for the first New Zealand estimate) to two other methodologies and proposed a revised approach. The proportion of deaths needing palliative care increased substantially in England, from a minimal estimate of need of 37% of all deaths using the Rosenwax methodology to 63% of all deaths using Murtagh’s revised approach. This alone is sufficient reason to revise the New Zealand estimates of need.
Further reasons to revise the New Zealand estimates of need include providing results over a longer period of projection, using more recent projections, using projected deaths (rather than the projected population) and removing anomalies between the adult and child lists of conditions. The key concern when projecting with a rapidly ageing population is that the patterns at the older ages seem plausible. The methodology used in the first estimate in New Zealand produces a shape by age and gender which declines rapidly at older ages. Thus as the population ages, this approach produces a lower need for palliative care. This result is counter-intuitive and is a key reason for reconsidering and revising the methodology.
The historic patterns of deaths in New Zealand were examined using data from the Ministry of Health Mortality Collection (MORT). The data for this analysis was extracted in December 2015 and covers all deaths registered in the calendar years 2000 to 2013. Patterns by age, gender, ethnicity and deprivation were examined. Strong patterns were found for cause of death and place of death by age and gender. An important part of the investigation was the examination of the persistence of historic patterns by region and over time, with the results leading to a decision to use the historic patterns over the period 2009-2013 in the model of need for palliative care.
Methodologies for determining the need for palliative care typically use cause of death lists to determine need but this ignores the context in which the end of life is reached and the likelihood of palliative care being provided. The revised New Zealand estimates of need use an approach which combines cause of death lists with place of death. The cause of death lists were revised by a clinical panel convened from people experienced in providing palliative care in public hospitals, aged residential care and in hospices. Examples of conditions now included in the definition of need in New Zealand are deaths from chronic rheumatic fever, tuberculosis (in the light of the rise of antibiotic-resistance) and gangrene. As children and young adults now live much longer with congenital conditions, the palliative care team at Starship Child Health was also consulted.
The need for palliative care is an estimate of need at a population level for the whole palliative care system. Conceptually, the aim is to include all deaths that typically benefit from a palliative care approach. In no way do these lists of conditions determine who gets palliative care in practice, as that must always be based on the individual patient and judgement of need at the time.
The revised NZ Need for Palliative Care, when tested on historic MORT data from 2000 to 2013, produces a need for palliative care of 79.4% of all deaths. Note that this is the historic proportion and not the proportion of need that should be applied in future.
A second estimate, the NZ Maximal Need for Palliative Care is also produced which includes all deaths other than those in pregnancy and childbirth, and sudden deaths from external causes (like accidents and self-harm). All three estimates are useful to planners: the need for palliative care, the maximal need for palliative care and all deaths.
The historic patterns of need for palliative care by age, gender, ethnicity, deprivation, cause of death and place of death were examined. Importantly, the shape of the need for palliative care by age and gender is more intuitive and appropriate than the previous estimate, with the need for palliative care increasing at older ages.
As the population ages, so the need for palliative care as a proportion of all deaths will increase slightly. The proportion of need will also differ depending on the age structure of a particular District Health Board (DHB) and how this evolves over time. A spreadsheet model has been developed which provides projections and graphs of the need for palliative care at national, regional and local DHB level. Results are given to enable planning for public hospitals, residential care and hospice care.
Projections of future deaths from Statistics New Zealand are used in the model. National population projections from 2016 to 2068 are used to produce long-term projections of need which are useful for policy purposes and for workforce planning. Shorter projections are produced annually by Statistics New Zealand, according to assumptions specified by the Ministry of Health. The projections from 2016 to 2038 are used in the model and these are the same projections used for DHB funding and planning.
The final technical report on the methodology used includes commentary on the national results and a summary of the results by DHB. More detailed information by region and DHB is available in the spreadsheet model. Recommendations are made in the report on the frequency of updates for the model and the events which might trigger a revision of the methodology used.
For slides of the findings and access to the projection model, contact Heather McLeod.