On the importance of being prepared…

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When my granny announced that she wanted to plan her funeral, I wasn’t the least bit surprised.

It may seem like an odd request, especially in a society which shies away from even the thought of death, but my granny had always embodied the unconventional. She had attended art school in Paris in the late 1940s, before running away from finishing school to join the navy, a scandalous choice for a young lady in those days.

I may have been unsurprised, but my dad was shaken by the request. As a result, whenever the topic came up, he would change the subject, telling her: “We’ll take care of that,” or “let’s not talk about that now.”

He was particularly disturbed by my granny’s request to meet the undertaker who would be the one to prepare her physical form for the final ritual farewell, a ceremony more for our benefit than for hers. He called me up one day to talk about this new, and to him quite morbid, project.

I wondered what to do about this. I am also close to my granny, and the thought of a world without her in it is difficult to contemplate. Never in my whole life have I had to deal with a world without her, so the thought of having to plan for this seems surreal and almost unnecessary.

However, research has shown that planning, not just for funerals, but even more importantly for end of life care, can dramatically improve the experience of this catastrophic time, buffering the catastrophe and downgrading it to tragic and heartbreaking but not unmanageable. Planning for care at the end of life when you are still relatively healthy, makes sure that you are the one deciding what will happen to you in the case of a medical emergency. This avoids leaving these decisions to strangers or – at best – leaving your distraught family members to make difficult choices, always wondering whether this is what you would want.

The idea of advance care planning is based on the recognition of patients’ rights to be informed about options for their care and to refuse medical interventions if they so choose (Murphy, 2009).

Dr Anthony Riley, a US physician and hospice founder interviewed by the Baltimore Sun, reminds us that the preparation of advance directives is an “affirmative choice,” and that people are encouraged to specify the procedures they WOULD want at the end of life, as well as those they would not.

Dr Riley goes on to describe Advance Care Planning as: “rational decision-making about what truly matters to us” at the end of life. However, confronting the end of life of oneself or a loved one is anything but rational. Being human, we rarely do things according to their logicality. As with most of life, so many more factors are at play than simply what would be most rational. Psychosocial factors, emotions and cultural history – these same things that enrich our lives – intervene to turn what could be a cut and dry process into a tangle of feelings, doubts, hesitations and complications.

In many social contexts, talking about death or serious illness is almost completely taboo, the perception being that to name the process is to invite misfortune further into our lives. This makes planning for this most certain of eventualities almost impossible. Even in places without these strict social sanctions, convention, etiquette and personal preference mean that important conversations do not take place. Therefore vital plans are left unmade, requiring us to step up, take control and have the strength to make (literally) life and death decisions when we are at our weakest, either as a patient from sickness, or their family with trauma.

Advance directives, a formalised part of advanced care planning, offer a clear way to ensure that health care professionals are aware of the patient’s wishes for their medical care, should they be unable to communicate these themselves.

In many countries, the Advance Directive form is a legal document. Ask your doctor, community nurse or local hospice or palliative care provider about it.

As well as preparing advance directives, people are encouraged to appoint a person to take the role of power of attorney, to be a proxy decision-maker if necessary.

Reviewing the literature on advance care planning, Murphy found that formalising preferences for care:

  • Increased patient autonomy and patient satisfaction
  • Patients who had engaged in advance care planning were more likely to die in their place of choice
  • Felt that they had greater control and influence over their medical care
  • Believed that their health care provider better understood their wishes.

She also found that patients wait for physicians to initiate the discussion, while physicians wait for patients to take the first step. So we should be grateful that my granny is ready to discuss these topics and take the opportunity to have an open and honest conversation with her. 

After all, as my granny herself said: “Although I was a dreadful girl guide I do believe in being prepared and why leave someone else to do all the stressful stuff when one is quite capable of helping?”

Not everyone is ready or willing to have these conversations, but it is extremely important for health care providers to be educated about advance care planning and prepared to initiate these discussions with their patients, if they so choose. It is also important that patients and families are aware of their right to discuss advance care planning with their healthcare provider.

There are resources available to provide information on these important topics and to help people and families to structure plans for care at the end of life. For example, read more on the websites of CHPCA, NHPCO and The Conversation Project

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