Caring in the Face of Crisis: Families in Unison

Dramatic advances in healthcare make it possible to prolong life and delay death leaving us with many choices at life's end for which we are often unprepared. It is at this time that many patients and their family members learn how inexact the science of medicine can be.

Physicians may not be able to tell you what you would like to know about life expectancy, quality of life, or the means through which death may occur. You may also get varying opinions from the doctors and other healthcare personnel that may be conflicting and unintentionally add to any existing confusion. It is also possible that no one person from the medical profession is coordinating the care, leaving a patient and his or her family to try to process all the information and make decisions, many that will likely have long-lasting implications.

This can be a source of great stress and tremendous decision-making pressure as physicians may sometimes retreat to a position of offering choices as opposed to making recommendations.

This pressure will reveal the essential internal structure of families, likely falling into two categories:

1. The family will operate as a unit.
This often means that a single spokesperson will be designated who will be the primary contact with medical personnel and the rest of the family. It is helpful if that person has been designated as having power of attorney and who also may be following dictates contained in a living will. In a truly healthy family, good decisions can and do occur, and often without these legal documents.

2. The family will fracture.
This often means that more than one person is interacting with medical professionals, that those same people are having several uncoordinated conversations with family and friends, and that in a worst-case scenario, they are advancing different agendas with regard to treatment.

In the first scenario, the patient's needs are first and foremost. If death is likely, he or she will die loved and surrounded by their loved ones who in turn will often be drawn closer together by the experience. They may also be further gifted by a lasting peace as they review the events associated with the process.

In the second scenario, the patient may actually have his or her suffering increased by virtue of either medical procedures of dubious value or by having a painful life unnecessarily prolonged through pointless therapies. Relationships within the family may be irreparably damaged and accompanied by a pallor of guilt-tinged conflict that lingers well beyond the death of the patient.

While one may not have the power to dictate the circumstances leading to death, steps can be taken to minimize the distress by charting a course in advance.

1. Talk to your family about how you want to be cared for when death approaches. The best time to do this may be at a family holiday gathering with a few of your most trusted family members.
2. As a family member - listen to what your loved one is telling you and make sure that you have a clear understanding. Define the extent to which you are willing to follow their wishes. Ask lots of questions.
3. It may be helpful to schedule an appointment with the doctor for the sole purpose of having this discussion in the presence of a medical professional seeking his or her guidance.
4. Obtain the needed documents: Power of Attorney for Health Care and Living Will. Most are easily accessible at health care facilities, libraries, or on the Internet. The Wisconsin Department of Health and Family Services (DHFS) is required by state statutes to make available three advance directive forms. The three forms are:
   • Declaration to Physicians (Wisconsin Living Will)
   • Power of Attorney for Health Care
   • Power of Attorney for Finance and Property
   You can obtain copies of the forms either by printing them from the website of the Wisconsin Department of Health and Family Services or by sending a stamped, self-addressed business-sized envelope to:

   Living Will/Power of Attorney
   Division of Public Health
   PO Box 309
   Madison, WI 53701-0309

Remember that the dying process often is not clearly defined and that some choices may have to be made without all the information you would like available. This is where the love that has been stored up will help and from where the confidence will come that the very best decisions possible were made.

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