Advance Care Planning & Its Impact on Surviving Family Members (and Hospitals)

The keynote address at the Wisconsin Assisted Living Association’s 2015 annual conference featured Bernard Hammes, PhD, the director of Respecting Choices at Gundersen Health System in La Crosse, Wisconsin. Dr. Hammes discussed the importance of knowing and honoring people’s wishes related to end-of-life care issues, and contended that having a living will is not enough; people need to take additional steps to communicate their wishes to family members and doctors. He listed common roadblocks that foil living wills:

  • The document is sometimes too specific about certain life or death situations and leaves other scenarios vague. For example, some people request that life support be withdrawn if they lapse into a “persistent vegetative state.” However, a “persistent vegetative state” has a narrow medical definition that afflicts an insignificant number of people.
  • Doctors and medical staff need to know of the living will’s existence and accept its legal standing. In the absence of a solid electronic medical records system at the hospital, a patient’s desires can go unheeded.
  • Family members need to know of the living will and be willing to make decisions consistent with the plan of action (or inaction) identified in the document. Often an unaware family member will be contacted in an emergency to make a life or death decision on behalf of an unconscious parent or spouse; that uninformed family member will often choose treatment options that conform with their own desire to keep their parent or spouse at all costs, even though that might not be consistent with the wishes of the patient.

 Dr. Hammes recommends that individuals and their family members engage in an advance care planning conversation led by a social worker. Such a meeting, when facilitated by an appropriately trained professional, takes one hour but provides measurable benefits for both the family and the hospital that far exceed the cost of the meeting.

People of all ages are advised to create an advance care plan. Young, healthy adults can indicate their medical care preferences in the event they sustain a traumatic brain injury that leaves them in an impaired state. Terminally ill older adults, by contrast, will make choices that relate to a broader range of scenarios, with a particular focus on their specific condition. For example, someone who suffers from cardiopulmonary failure will express preferences regarding intubation or administration of CPR. The document that arises from the meeting will have legal standing but is more important as a way to foster communication and understanding among family members and medical staff.

A recent study shows that ACP benefits the family and, perhaps surprisingly, the hospital or care facility. Families that went through ACP showed significantly better outcomes with respect to their emotional states after the death of their loved one. Those that heard their loved one express end-of-life preferences reported feelings of sadness, but also greater levels of understanding and acceptance. Meanwhile, the control group, which had no ACP, reported significant emotional turmoil, including levels of sadness that often crossed into clinical depression.

The hospital benefitted also. Those family members who went through ACP with their loved ones viewed the hospital significantly more favorably than did the control group that that did not do ACP. Intriguingly, the care setting was the same and the medical staff was the same. The only difference was the one-hour conversation with the patient and the family member and, often, the amount of medical treatment provided, with the advance planners typically receiving less. Eliminating unwanted, invasive, and expensive medical procedures reduced stress and made the hospital experience more personal and more acceptable, according to the research.

Dr. Hammes’ work centers on implications for hospitals, but senior housing providers that cater to high acuity residents will undoubtedly benefit from introducing the advance care planning concept in their communities.

Additional Resources: The Respecting Choices website provides resources and further information. It is sponsored by Gundersen Health System, Dr. Hammes’ employer. The Conversation Project offers guidance on discussing the issues with loved ones and includes a conversation starter kit.


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