Supporting Self-Care: The Contribution of Nurses and Physicians

APPENDIX B
Selected Programs and Tools

Description

This is a resource manual for persons living with AIDS who wish to die at home and for their home care teams. It is a 214-page binder containing useful information on practical issues about AIDS and dying at home, as well as a notebook-style tool to facilitate record keeping and communication between members of the care team. Marj Richings, a nurse at Casey House Hospice who has been using Living with Dying, Dying at Home with her patients for the past two years, says "It is a good starting point for discussion with families. The information is very easy to read, and can act as a catalyst to discussion." The manual follows the philosophy that dying is a natural part of life, something that we all have to come to terms with. Its contents are intended as guidelines, not as a set of rules that must be strictly adhered to, and the manual is meant to supplement other resources.

Developed by the AIDS Committee of Toronto (ACT) and Project Access, with support from the HIV/AIDS Care, Treatment and Support Program of Health Canada, Living with Dying, Dying at Home is available free of charge in French and English through the National AIDS Clearinghouse. The manual began circulation in 1994, when it was used as a part of a package to train care providers (especially volunteers) across Canada. An evaluation and report on these training workshops was produced by Casey House Hospice and ACT, and published in 1995 (Randall-Wood and Russell 1995).

Characteristics of Note

Client-centred

Written by a multidisciplinary team of professionals in conjunction with people living with AIDS, the text is clear and straightforward, making it accessible to a broad range of reading levels. "The manual is intuitive and straightforward without being excessively medical. It has a very reasonable, balanced approach," says a caregiver who referred to the manual when his partner was dying last year. "Even those with limited English can still use it because it has some good illustrations," adds Richings.

Because it is assembled in a binder, users can personalize the manual. Pages can be added and removed, sections can be reordered according to need, and there are numerous checklists and charts that can be photocopied for logging activities, medications and telephone numbers, as well as ample space for keeping notes.

Although the manual provides a multitude of information, its authors stress that caring for a dying person is extremely variable, and everything in the manual may not always apply. Users are invited to skip sections that do not pertain to their situation. The manual stresses that the work of the care team should always reflect the unique situation of each individual and be based on the values and ideologies of the person in care, reflecting her or his personal background, life experience, relationships and unique care needs.

Learning and personal development

This manual's very existence supports client choice and the text stresses this point throughout. In the introduction, the authors state, "As long as she is able to make decisions, a dying person has the right to decide what kind of care she wants. For this reason, the dying person is always considered the centre of the care team circle" (Johnson 1994, 7). Living with Dying, Dying at Home covers a broad range of topics, including setting up a care team, infection control, beds and toilets, symptom control, pain, medications, nutrition, AIDS-related illnesses, dementia, emergencies, death and dying, grief and bereavement, and how to gain access to further resources. "It is useful in small snippets" you go through it, and every now and then you find a gem," says one caregiver. He adds, "If you've never cared for someone, it's indispensable. If you've already been exposed to similar situations, it's a nice adjunct to what you already know."

A caregiver who used the manual until his partner recently died of AIDS points to the importance of practical information: "Every day things came up, so many issues that just aren't discussed: how to turn the patient in bed, change incontinency diapers, give a sponge bath. ... The manual answers day-to-day questions that you don't think of until you're confronted with them." Adds another caregiver, "The manual taught me how to do lifts and transfers, and how to turn people in bed."

"This sort of information," says Marj Richings, "is good for people's sense of esteem. People realize that once they're shown how to do it, they can do it as well as anyone. Their care really improves; there are fewer sore backs, the patient is not tugged to and fro as much."

"The book answers a lot of questions," says a caregiver, "so there are no surprises. ... It tells you what to expect, what avenues to take. Questions that you're afraid to ask, or don't know who to ask. It gives comfort in that there are no surprises."

Richings also comments on the importance of having information about death and dying: "Even if people have a basic knowledge about AIDS, there is not much literature out there about this aspect. It is helpful because people may not know what to expect."

For Further Information

• To obtain a free copy of the manual, contact the AIDS Clearinghouse, 1565 Carling Ave., Suite 400, Ottawa, Ontario, K1Z 8R1, tel. 613-725-3434; fax. 613-725-9826.
• Contact Casey House Hospice, 9 Huntley Street, Toronto, ON, M4Y 2K8, tel. 416-962-7600; fax. 416-962-5147.

References

Johnson, A. 1994. Living with dying, dying at home: An AIDS care team resource manual. Toronto: AIDS Committee of Toronto, Project Access.

Rand all-Wood, D., and Russell, J. 1995. Living with dying, dying at home: Final report. Prepared for Canadian AIDS Society.