One of the issues I dealt with almost daily is the one of when to begin palliative care. For those who don’t know the term, palliative care means that the focus of the care of your loved one shifts from trying to maintain life as long as is humanly possible (families often believe they will be seen by family or God as “giving up”) to the focus of promoting function, comfort, and quality of life. At the end stages of the disease, this usually involves a hospice referral.
 
Palliative care requires the family/care provider acknowledge a few things:

• The acknowledgment that Alzheimer's disease is chronic (long-lasting) and eventually fatal.

• That the patient's level of disability and discomfort will at some point exceed their quality of life.

• The concern that the patient's physical, emotional, and spiritual comfort are the most important things—even when a doctor says "We must...."

• That only the people empowered to decide for the patient can really evaluate what is best for the patient in light of what the patient would have wanted.

• That life is finite (has an end).

Palliative care is not necessarily something that happens at the end of life. Many families take a palliative care approach as soon as the diagnosis is made by doing the following:

• Making sure the patient is free of pain.

• Making sure the patient participates in social, family, and individual activities.

• Trying to avoid behavioral outbursts by managing fatigue, changes in routine and the environment, inappropriate stimuli, etc.

• Treating depression assertively.

• Taking preventive health measures such as flu shots, medication administration, hand washing, encouraging/participating in exercise, etc

• Allowing the patient to eat what they like.

• Finding communication strategies that do not correct, but communicate respect.

• Paying attention to safety in the least restrictive manner.

• Trying to prevent acute hospitalization, non-essential surgeries, etc. The American Association of Medical Directors (of long term care programs) is now proposing citing facilities who have too many hospitalizations and transfers to other facilities or within a facility. The idea is that once you are living in a facility, you should be there for life.

• Attending educational seminars and caregiver support groups.

• Having the caregiver take care of themselves and encouraging treatment for depression.

In other words, palliative care focuses on quality of life, but acknowledges that life ends....and with this awful disease, promotion of survival to the point where everyone must live long into the final stage when the body shuts down—fighting it even then—is not necessarily good care.

Most families begin to look seriously at palliative care when the patient is no longer walking or speaking much, and is dependent for most activities. This begins with questioning how aggressive the medical care should be, with usually first questioning antibiotic use, use of medications for things like cholesterol management, or determining if surgery should be done for a fractured hip. While our medical colleagues may press for "curing reversible problems" or "preventing a stroke in the future" (it is their job as an MD to do this), it is the family's responsibility to determine how that fits into Mom or Dad's value system, and recognize that Mom's value system may be different than Dad's so they may be treated differently. The challenge for the caregiver and family is to remove themselves from consideration of what they want. These decisions are not about family; they are about the comfort of the loved one

Geri has been working with families and dementia since 1978. A retired professor from University of Iowa, Geri has been a consulting professional to the Washington University, St. Louis Alzheimer list for 13 years.

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