Sunday, February 28, 2010

Hospice Elders Need Control Opportunities During Dying Process

Control, we all crave it on some level. When it’s not there when we want it, our spirits feel stifled. Even toddlers will assert themselves when they feel their power slipping away. What about control needs of terminally ill elders in hospice care? Do they strive to exercise control over aspects of the dying process? Research says they do.

The School of Social Work at the University of Wisconsin-Madison explored this issue through in-depth face-to-face interviews with 84 terminally ill elders receiving hospice care. Interestingly, all 84 elders used at least one primary control strategy.  83 of them practiced one primary control strategy in combination with anther primary or compensatory secondary control strategy. Aspects of the dying process that they sought to control were these: Decision making, independence, mental attitude, instrumental activities of daily living, activities of daily living, and relationships

Although over half of the elders wanted more control, they felt their illnesses prevented them from having it. How frustrating might that be? What do these results say to caregivers of terminally ill elders? They say that these elders are just like everyone else in wanting to feel empowered. These results remind us of how important it is to be sensitive to control needs of terminally ill hospice patients. Even as they are dying, they still need opportunities to be proactive in their everyday living.

Frances Shani Parker, Author


  1. Just a thought here about the dehumanizing effects of being institutionalized: part of that dehumanizing process is losing control of life: ADL, IADL, attitude.
    So, it follows that returning control to a person reverses the dehumanizing affect.

  2. This post and Brian's comment remind me of a quote from the World Medical Association Statement on the Care of Patients with Severe Chronic Pain in Terminal Illness. "When a patient is terminally ill, the physician must focus efforts on the relief of suffering. Pain is only one component of the patient’s suffering. However, the impact that pain can have on a patient’s life can range from tolerable discomfort to the production of a sense of crushing and exhausting defeat.” I feel this sense of defeat may also be the impact felt by the dehumanizing loss of control. These precious folks have so many reasons to resist care and to lash out at others. Then, what happens? They are sedated and robbed of any remaining independence.