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End of Life: Survey Shows the Many Ways Caregivers Can Help Beyond Providing Medication

Carlson, Robert H.

doi: 10.1097/01.COT.0000414173.61443.17

Maintaining quality of life in a person close to death means more than pharmacological treatment of pain and other symptoms. Ideally, it also means creating an aesthetic, safe, and pleasing environment, both at home and in the institutional care setting.

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A European study led by Swedish researchers at the Karolinska Institute in Stockholm surveyed palliative caregivers in nine countries about what non–pharmacological activities they use to improve or maintain the dying patient's quality of life.

The reports, from 914 staff members working in in-hospital palliative care or hospice units, showed how creative and easy many of these activities are in keeping a dying patient comfortable and in connection with their patterns of everyday life.

Placing photos and small items from the patient's home in the hospice or hospital room where the patient can easily see them; using the patient's favorite aftershave, soap, or fragrances that prompt pleasant memories; telling the family about someone the patient would like to see—all of these can have a deep impact on patients in their last days or weeks.

The lead author of the study, published in PLoS (doi:10.1371/journal.pmed.1001173), Olav Lindqvist, PhD, RN, a researcher in the Department of Learning, Informatics, Management and Ethics at the Karolinska Institute in Stockholm, said the main study question was what caregivers actually do for dying patients besides provide medication.

The study, part of OPCARE9, a European research project focused on optimizing care at the end of life, solicited comments from hospice and palliative care workers in seven European countries plus Argentina and New Zealand.

Approximately 80% of those responding were registered nurses or other nursing staff; 15% were doctors; and 5% were other professionals, including volunteers, social workers, and chaplains.

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Areas Needing More Attention

The study identified several key areas in palliative care that don't always receive attention:

* Carrying out bodily care and contact but also abstaining when appropriate.

* Listening and talking to patients and taking the time to understand them.

* Creating a pleasant and safe environment.

* Organizing, planning, and evaluating care.

* Being present and enabling the presence of others.

* Aiding in the rituals surrounding death and dying.

Being present and enabling the presence of others could involve relaying messages from family members who could not be present, “small talk” with the patient, and either speaking or not speaking to the patient (“dare to be silent with the dying person,” one caregiver said).

Rituals could include help in arranging religious or spiritual last rites, funeral preparation, and discussing legal papers with the family.

And a pleasing environment might be maintained by knocking softly on the door on home visits rather than ringing the doorbell; opening windows to hear the sounds of the outdoors; and playing favorite music.

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Mouth Care

The researchers were surprised by how many activities involved mouth care, Lindqvist said. “Mouth care is basic patient care, but in the short statements we collected we heard of many things that caregivers on staff can do.”

The mouth care example shows how complex a simple activity can be, he said, with decisions about what mouth care includes, as well as how, why, when, and for whom it is done.

Bad breath from mouth lesions can make family and friends reluctant to sit close to the patient or even to visit when the patient might need that connection the most, he said.

The caregivers said family members can be shown how to perform simple mouth care themselves, such as moisturizing the patient's lips and giving sips of water. This can not only deal with the mouth odor but also lets visitors perform easy and useful hands-on care.

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How to Implement

Mouth care is also an example of an activity usually carried out by the least experienced person on the staff, Lindqvist said. But with a bit of education, the entire staff can see it as something very important.

“It's an easy answer to say education is needed to make caregivers aware of these potential activities, but what it would take is a continuous, systematic assessment of what caregivers do at a particular institution to promote basic caregiving to a higher status.”

An educational effort would also emphasize the ethical issues of caring for the dying, Lindqvist said, noting, though, that learning about and carrying out these activities will cost something even if they take very little time.

He said that the purpose of the study was to gather data on activities, and cost was not considered, although this might be a concern in the U.S.

Physicians as well as other staff members recognize how important end-of-life activities are and that they should be integrated for total care, he said. “But physicians can also have a great impact on implementation of these activities by promoting them, even if they are not typically involved in performing them.”

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“Refreshing” Approach

Asked for his opinion for this article, a hospice and palliative care specialist not involved with the study called it “refreshing” because much of palliative care research to date has focused on surveying people's attitudes toward palliative care but not much on what staff members actually do.

“This paper talks about what people are doing, but at the same time it lends some respect to these simple activities,” said Christian Sinclair, MD, a regional hospice medical director for Gentiva Health Services, a national home health care and hospice company with 30 hospices in the U.S.

Sinclair, who was an anthropology major as an undergraduate, said he appreciated the researchers' use of anthropology research methods, such as the “free-listing” approach in which hospice staffers simply wrote down all the things they do to make the patient comfortable.

“That generated lots of different ideas without trying to analyze the frequency or effectiveness of those activities,” he said. “If you talk to anybody in hospice they'll tell you that's precisely what we all talk about.”

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Low Effort, High Yield

He said a great thing about these activities is that they are simple and easy to do, requiring low effort but with a high yield, and mouth care is a good example. Mouth care is simple, inexpensive and essential, he said, but because it is so routine and low priority it can be overlooked by staff members.

“The study shows the many ways staff members are caring for a patient's oral health, and it also says that staff members can teach these basic actions to the family,” he said, adding that he thought the findings might encourage physicians to promote education of hospice staff on ways they can further improve a patient's quality of life with very little effort.

© 2012 Lippincott Williams & Wilkins, Inc.
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