Best laid plans could leave you in a bind
SECOND OPINION:Rigid directives are not the solution to care in later life, writes DES O'NEILL
THE SUFFERING of the great many Irish people who bought houses at the height of the economic boom with variable mortgages is a topical and telling demonstration of the difficulties of planning for the future. What seemed like a good idea in 2006 has now become a burden, putting strains on marriages and family life.
Signing into a binding written commitment for their financial future has been a bitter experience for this large group of people: how much more painful might it be if they had signed into unhappy binding agreements about their future healthcare?
On thinkahead.ie, the latest initiative from the Forum on End of Life, it is disappointing to see how few people realise the danger of simplistic solutions to care-giving for those who might have impaired intellectual capacity in later life, and also the danger of terming these plans largely based on not having treatment.
For, contrary to popular opinion, the greatest danger at the end of life is not that you will be overtreated, but that you will be undertreated, in a system that has strains of ageism and prejudice against disability, in particular dementia.
A classic example was when, in the development of the so-called Fair Deal scheme, the Health Service Executive side-stepped direct questions about who was to provide therapist support and specialist equipment in nursing homes, leading to much suffering and undertreatment for residents of these homes. The availability of palliative care for terminal stroke and dementia, while increasing, is limited.
As research develops into future care planning, there has been a marked cooling of enthusiasm for the concept of rigidly binding advance directives. Once faced with the realities of illness, people show huge changes over time in their preferences for the future. Indeed, the perceptiveness of age has been shown in the first Irish longitudinal study on ageing (Hessop-2), where older people wish to make any such plans only at advanced old age.
Also the public and some healthcare professionals often underestimate both a patient’s quality of life and their ability to signal their needs and wishes, even with advanced dementia. Finally, not only are the potential paths of care extraordinarily and unpredictably varied, but therapy and treatment choices change rapidly: a decade ago there was not a single stroke unit in the country; now, nearly every hospital has some elements of this service.
So what might I want if I were trying to plan for well-balanced healthcare support for myself? I would like to plan for such care at a point where I have some experience and knowledge of the likely conditions.
The plan should be developed with a healthcare professional who has indepth knowledge of the relevant conditions. I would like to request positive, proactive care, such as specifying that those looking after me would have specific training in gerontology and dementia care, so that my wishes can be interpreted in a sensitive fashion for as long as possible.
Rather than binding my healthcare providers into an outdated view of a fast-changing medical landscape, I would like it to be phrased in terms of advanced care preferences with a strong moral force rather than a legally binding directive.
I would like to nominate a primary co-decision-maker rather than a healthcare proxy, a subtle but important emphasis on assisted decision-making, extending my autonomy. Even in late dementia, I may make preferences clear by pulling out a tube or line, or by insisting on drinking even though I might have a swallow disorder that spills liquids into my lung. What is most important is that the care staff know to interpret and support these decisions.
All staff dealing with adults need training in the illnesses of ageing (particularly dementia and stroke, which can affect the ability to communicate wishes) and in the interpretation of flexible advance care preferences that can adapt to changing circumstances and new therapeutic and palliative advances.
Bertrand Russell wrote that the demand for certainty is one which is natural to man, but is nevertheless an intellectual vice. In the case of the advance directives currently proposed by the Forum on End of Life, certainty might also foreclose early on your options for a full palette of care at the end of your life.
Des O’Neill is a consultant in geriatric and stroke medicine