Whether experiencing palliative care for a life-limiting illness or experiencing end-of-life care, patients and their loved ones enter into an emotional time when a family is experiencing a very challenging situation. It is incumbent on health care professionals to recognize the things that can make a difference to the patient while being cared for at home.
One of my current projects involves the analysis of a large dataset of home care assessments to explore how individuals experiencing palliative care are functioning in their daily lives, where they are experiencing impairments and difficulties, their use of the health care system and methods to evaluate the care received. My analysis contributes to the provision of care that supports positive quality of life and dives into the details of what can help to evaluate, and constantly improve, the care being provided in the community. This is what draws me into this complicated and charged time in people’s lives.
I found that there is almost no literature about the details surrounding the quality of home care. The home setting has typically not been at the top of the list of things that academics or the public are concerned with when they think of health care. In the area of palliative care, the evidence has tended to focus on things like recurrent hospital admissions or emergency room visits. We have not been as forward thinking about the other events that can be very difficult when experienced by someone who is dying (e.g., pain management, shortness of breath, nausea).
The analysis I am undertaking needs to be useful to home care providers and be clinically relevant. Therefore, I am generating a set of quality indicators based on the existing data collected and through consultation with front-line clinicians who work in the community.
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