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April 27, 2014

Planning for Future Health Needs

Reuel S. Amdur

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It took a Supreme Court decision to make the ultimate decision on the fate of Hassan Rasouli, on life support at Toronto's Sunnybrook Hospital. The doctors said, pull the plug, the case is hopeless and he is brain dead. The family said otherwise, and the court came down on the side of the family. One wonders if an end-of-life discussion ever took place in the Rasouli family, to determine his wishes in a situation such as this. If not, perhaps such a discussion would have avoided this long and expensive legal battle. Recently, there was an on-line seminar on advance care planning from Carleton Rehab Solutions. The two presenters from VHA Home Health Care were Sue Grant, a nurse, and Jose Medeiros, a social worker.

According to Grant, “It is never too late to establish an advance care plan.”  While the Rasouli case casts doubt on that proposition, at least it applies so long as the person is capable of engaging in a discussion of the matter.

The plan discussion is best done with a person who is close.  It involves deep reflection on what is important, considering the person’s present health status and future possibilities.  She gave an example of a woman who lost her husband in intensive care.  This led her to set up her own care plan.  She herself required care, some of which was provided by her husband, and so she recognized that she had to make some decisions now.  She recognized the need to move from her house to a senior’s complex, beginning with a unit for independent living with some support but recognizing that she would sooner or later have to proceed to sections of the complex where more intensive care needs were met.  She shared this plan with home care staff and caregivers.

Before a plan is completed, there is a need for clear and sensitive communication.  The goal is to get a well considered understanding of the person’s wishes.  Let’s call the person whose plan is being made the decider and the person helping the helper.  The helper may be a family member or friend, or it may be a health care professional.  The helper enables the decider to elucidate his wishes.  The need is to be nonjudgmental. 

The helper may seek to clarify by his own personal reflections.  For example, “if I were in great pain, I would not want heroic measures to keep me alive.”  Pain is one thing that many people think of in making a plan.  This reflection opens the issue for discussion of this and elaboration on other scenarios.  The helper may also address the issue of immediacy.  “How has your health changed in the last month?”  This aids the decider in seeing how he sees his problem.  And an advance care plan is not carved in stone.  The decider can change his mind as his situation changes.

In helping a decider with a chronic condition to think through a plan, the helper can encourage him to reflect on what is going to happen in the future, including possible loss of cognitive functioning.  The decider’s caregiver, if not the helper in this situation, should also be part of the discussion.  The helper may ask the decider about how things were with other people whom he knew in their last stages of life.  Were they in hospital?  Were loved ones involved?  Were their needs addressed?  Were they allowed a voice in things, or was their voice taken from them?

The advance care plan involves a dialog that does not end with completion of a form.  It is something that continues, with ongoing reflection and negotiation as things change over time.  Many people will say that life is only worthwhile if they are oriented.  Others will talk about not wanting to be totally dependent and bed-ridden.  A common, but not universal, wish is not to be in pain.  People who experience the agony of a struggle to breathe may see that as critical, though there are drugs to treat that problem.  CPR is one form of treatment that is sometimes considered in hospital.  While CPR in the community is often successful, in hospital it has more limited prospect of a good outcome.  Some hospitals have a check list of patient desires, and CPR may be on it.  The person can say yes, on the chance that it will work, or no, it will just prolong the agony.

The hospital chaplain may be involved.

The health care system universally available never provides enough care in the community in the case of chronic dependence.  A person needs to consider what will be needed from his social and family networks and what services he may need to buy.

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