Improving Care for the End of Life, Online Edition The Palliative Care Policy Center

Sourcebook : Improving Care for the End of Life : 6.4 Assess Patient and Family Perceptions of Suffering

Measuring the extent to which patients and families suffer can guide providers in how to meet each person's needs. One Breakthrough Series team studied ways to evaluate suffering and looked at strategies that seemed to help patients and families cope.

Health Partners

Based in Minneapolis, Health Partners is a nonprofit family of health care organizations and plans that provides health care services, insurance, and HMO coverage to more than 800,000 members. The team aimed to relieve suffering at the end of life by asking patients about their level of suffering and their ability to cope with this suffering and by offering interventions focused on reducing patient suffering and/or increasing coping skills.

The goal in identifying suffering was to reduce that level by half. The study occurred in home and skilled nursing facilities.

Specific changes included:

Baseline Measure of Reported Patient Suffering, Health Partners, Minneapolis, MN. Level of Patient Suffering by Category, Health Partners, Minneapolis, MN.

As one clinical nurse specialist said, "The suffering assessment helped us shape the care plan. We found after using it that the patient's needs were quite different than we had expected. We were able to accomplish a lot with the patient in a very short period of time." After completing the assessment, one hospice patient said, "It's the first time I've slept since I got the diagnosis."

To measure suffering, the group developed several forms for ranking three different categories of suffering: physical, spiritual, and personal/family. The group tracked variables before and after the intervention and also used qualitative reports on what patients use to reduce suffering and cope with their illness.

Measures included many patient self-reports, such as:

Sample questions from "Comfort Assessment"
How much are you suffering due to your symptoms?
012345678910
No SufferingExtreme Suffering
How much are you suffering due to unfinished business?
012345678910
No SufferingExtreme Suffering
How much are you suffering due to your fear of the future?
012345678910
No SufferingExtreme Suffering
Reprinted with permission of Health Partners, Minneapolis, MN

Patients found relief from suffering primarily through contact with family, friends, and hospice staff, including knowledge and comfort given by a nurse; prayer and the religious readings; and medical treatments. To cope with suffering, patients turned to others, including spouses and children and hospice staff, as well as coworkers; prayer; and "my outlook on life." Patients generally reported that their ability to cope was medium (29 percent) or high (64 percent); 7 percent rated it as low.

The team measured results in part through self-reports by nurses, social workers, and clergy on the value of the comfort assessment in improving patient care. The project reported several findings:

Staff reported that the suffering assessment tools added value to patient care. For instance, the assessment "helped identify the `real' worries, i.e., client concerned about his elderly mother and the effect his dying would have on her."

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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.

For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].

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