A consequence of advances in nutrition and medicine is that people live longer – a lot longer. With longevity, however, comes the increased prospect of disability or serious illness. But, as they grow older, few people consider their wishes in terms of their future health care. For most, this is not a subject of “normal” conversation. It’s also a question, perhaps, of facing up to the possibility in the future of a dependency on others – and, of one’s own mortality. Most people simply “do not want to go there.” Pledging their organs in the event, say, of a fatal automobile accident, is about as far as most people are willing to go in terms of planning or thinking ahead in this regard.
One public opinion poll revealed that while the vast majority of Canadians (83%) feel it is important to discuss end-of-life care with a family member, fewer than half (44%) had done so. Half of those surveyed felt it important to discuss end-of-life care with a physician, but only 9% had done so.
Advance care planning is about considering and recording personal wishes regarding health care and treatment options in the future, and equally important designating someone to speak or act on their behalf should the need arise. If a person is confident that they have communicated their wishes to loved ones and that their wishes will be respected, they will be able to cope with serious illness with less anxiety and less stress.
A critical first step is to begin to discuss with family and loved ones your feelings about ageing, the future in general, the prospect of serious illness, the kind of care you hope for, and your wishes regarding that care. This rarely happens, the consequence of which is indecision, uncertainty and potential family conflict, and invariably at a time when energies – both emotional and physical – should be spent elsewhere. Share your feelings and thoughts with a trusted health care professional; seek their advice.
The second most important step is to appoint someone who will respect and be guided by your wishes in the event that you are no longer able to communicate, a substitute decision maker; someone close to you in both affection and knowledge. It is not a responsibility to be taken lightly.
With these steps taken, you can then begin to talk about your wishes, talk through different scenarios, perhaps guided by the old adage “hope for the best, but plan for the worst.”
Discussing care planning in the future is not a topic to rush. It should take several conversations with family and loved ones over a period of time, and be a subject to revisit as circumstances change. There are, after all, many unknowns and, for this reason, nothing need be carved in stone. In time, you may wish to change your mind or simply have a change of heart.
This article hopefully will encourage people to take the first steps in advance care planning. There is more to this subject that can be reasonably covered in a short article. For example, the laws and legislation covering patient consent and their rights vary from one province to another. In Ontario there is A Guide to Advance Care Planning, a useful booklet available at http://www.citizenship.gov.on.ca/seniorsor by calling 1.888.910.1999. or by calling 1.888.910.1999.
Barry R. Ashpole is a communications specialist and educator active in palliative and end-of-life care.
08.7.09. © Barry R. Ashpole 2009