A better way….

EOL 10“We imagine that we can wait until the doctors tell us that there is nothing more they can do.  But rarely is there nothing more that doctors can do.”

When the battle for life can be won and the cost of the war is not too great, I want medicine to help me win that fight.  Unfortunately, not all battles can be won or even survived.  Understanding the difference between fighting to win and fighting to lose is paramount.  It is here that medicine falls down.  Patients need help to understand when to change tactics rather than fight until the end.  Leaving that decision solely up to the patient, without providing assistance, is much like leaving him/her stranded on the battlefield.

“… Swedish doctors call it a “breakpoint discussion,” a systematic series of conversations to sort out when they need to switch from fighting for time to fighting for the other things that people value — being with family or traveling or enjoying chocolate ice cream.”

EOL 05Even when patients do advance planning, families are still faced with end of life decisions that are fraught with difficulty.  Just having the paperwork in place is not enough.  Without also having detailed discussions with family members, the patient’s wishes may not be fully understood and, in turn, may not be actualized.  Even family members who know what the patient wants may be swayed by emotions and circumstances they are unprepared for.  As a result, a patient can die in a setting he/she did not agree to or plan for.  When the discussions take place in advance, the burden on the family members is lessened.  Moreover, family members are not left questioning whether their decisions were the right ones — the patient has already decided that.

“… death is uncertain, but the timing isn’t.  So everyone struggles with this uncertainty — with how, and when, to accept that the battle is lost.”

The right person for the job of guiding patients and their family members through this process may not be the doctor.  The doctor should realize the point in time that these discussions actually need to happen.  Unfortunately, this usually happens way too late to truly benefit the patient.  Some kind of palliative care specialist should be added to the patient’s care team much earlier, even just as a consultant.  Having access to information about options before the decision to stop treatment needs to be made is beneficial to the patient.

EOL 09“Hospice care seemed to extend survival for some patients. … The lesson seems almost Zen: you live longer only when you stop trying to live longer.”

Perhaps what really needs to happen is more education.  Both doctors and the general public need to fully understand hospice’s goals.  I think hospice really does strive to do what most people actually want at the end of their lives.  But people feel that turning to hospice means they are giving up or accepting defeat.  To me, it just means someone is changing tactics — still winning, albeit in a different way.

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2 thoughts on “A better way….

  1. I definitely agree that many patients within the medical care system need to change their outlook and opinions on what palliative care can do for them. It should not be seen as giving up and accepting defeat, but rather looking on to a new chapter of their life regardless if it means it is towards the end of the saga. Most people who enter hospice realize that it is a worthwhile end of life care and something that betters their experience in life.

  2. Your blog is right on track with what I believe the medical team desperately needs. A palliative care consultant could truly benefit every terminally ill patient. Sounds decisions can only be made when options are fully explained to them and at the same time the patient needs to convey their wishes on what is important to them inthe time they have remaining. Dissussions should start early and often as plans may change. Hospice care is an excellent iption but one that needs to be understood more fully by the public. Through education the entire team; doctor, patient, family,consultant, and hospice must work together for optimal care.

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