September '99
by Patricia Cantwell
Co-investigator with Sally Turco

For the past several decades it has been the norm for terminally ill patients to die in a hospital. With recent changes in health care, there is greater emphasis on providing care at home including supporting families to enable more home deaths. Providing for a death at home is not a simple undertaking and may not be desirable or practical in every family situation. It was identified that there was a need for home care coordinators to have some objective way to assess the viability of a home death in each individual family circumstance rather than to pour resources into a situation that had little prospect of resulting in a home death.

Two nurses from the Regional Palliative Consult Program in Edmonton did a search of the literature and developed a short, simple questionnaire for the Palliative Home Care coordinators to use in a research study to evaluate some predictors of home death. (The results of this study have recently been submitted for publication.)

The literature indicates there is a need for 1) the patient to desire a death at home, (1-3,5-7); 2) the caregiver(s) to desire a home death, (3,6,8,9); 3) good family physician support with availability of medical support 24 hours/day, (2,5,7-9); (in the Edmonton region the Palliative Home Care Program provides 24 hr. RN support via phone/home visit as needed); 4) at least one, but preferably 2 or more informal caregivers, (2,4,5,6,8,11); 5) adequate financial resources for care at home, (i.e. caregiver able to take time off work to provide care without threat of job loss, adequate finances to cover costs of medications and/or cost-sharing for medical equipment in the home etc. (2,4,5,10,11). The authors also asked the Palliative Home Care coordinators to assess the environment of the patient for suitability for a home death. For example, is there space for, and acceptance of, medical equipment such as a hospital bed or commode if needed? Can the patient enter or leave the dwelling if needed? Will the patient/family accept help in the home such as personal care attendant/homemaker/LPN?

Of the 5 major factors identified, the ones that were most relevant in predicting viability of a home death for patients in our area were: 1) the agreement between the patient and caregiver(s) regarding the desirability for a home death; 2) the presence of 2 or more informal caregivers; and 3) the availability of medical support 24hr/day.

We found that if patients did not have these 3 factors in place the likelihood of them dying at home was quite low and the Home Care coordinators found it was prudent to introduce the concept of hospice, if needed, as part of the long term care plan.

At present the Palliative Home Care coordinators do a Home Death Assessment on each patient admitted to their caseload and they reassess these factors as the patient's condition changes since patients and families may change their minds about the desirability of death at home as their circumstances change.

We would be interested in learning from nurses in other areas what factors you identify as being essential for enabling a home death.

Bibliography

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