The Common Sense Guide to Improving Palliative Care > Caring for Caregivers > 6.3 Identifying the Problem and Setting an Aim

Sick To Death book cover This extract from the online edition of The Common Sense Guide to Improving Palliative Care is used with permission.

Caring for Caregivers: Identifying the Problem and Setting an Aim

You may have some sense of what the problems are for caregivers in your particular setting. Indeed, the needs are substantial. Providing supportive services to caregivers crosses almost all settings because so few organizations are doing much for caregivers. You may need to do some groundwork to get a better sense of what the most important problems are for your families. Obtaining baseline data from the caregivers of current and former patients may help you brainstorm. For example, follow-up phone calls to even a few (10–20) caregivers of patients recently discharged from your facility (e.g., high readmission CHF or COPD patients) will enable you to determine how the caregiver is managing in the community, what problems they are facing, and how the patient is doing after discharge. These calls may point out problems in discharge education and support; correcting these problems may result in improved patient care and lower readmissions. In addition, surveys of staff in particular settings (e.g., the ICU, the ER, dialysis clinics, etc.) regarding issues they see as problematic can illuminate areas for improvement. Once you have identified key issues, settle on at least one aim and decide how you will measure your improvement efforts.

Some QI teams have assigned social workers or nurses to broker services within their healthcare system (e.g., enhanced geriatric care coordination programs) or created an Advanced Illness Doula Program, in which a trained volunteer or paid employee serves as a guide who links the families of dying patients with the facility's social, financial, and psychosocial/spiritual services. Other teams have provided a hospitality cart for families keeping vigil in the ICU, or a private room or kitchen facilities for families to use while their loved one is hospitalized. Some teams have worked to enhance the advance care planning, communication, and continuity skills of their clinical teams through role playing, educational materials, and monitoring. Still others have worked within the larger community to enhance awareness of end-of-life issues and develop community-wide strategies to improve caregiver support services, continuity, advance care planning, and end-of-life quality of care.

Team Fairlawn

Rather than acting on vague ideas, Team Fairlawn started surveying clinicians in various hospital settings about their experience with seriously ill and dying patients and how well clinicians felt they were able to provide support and spend time with the family. In addition, the QI team decided to make a few informal telephone calls to the caregivers of recently deceased ICU/medical/surgery patients to learn what might have been more helpful to the patient and family during the last weeks and days. What they heard was not encouraging. While family members stated that they felt the medical care at Fairlawn was "good" for their loved one at the end, a majority of families reported the following.

They were infuriated that the billing department continued to send medical bills to the family in the name of the deceased. They wanted to know whether anyone had told the billing department that the patient was dead.

Team Fairlawn was impressed by what they learned from their baseline data collection and decided to fix as much of the problem over the course of nine months as they possibly could. They identified a series of interventions to achieve their broad goal of supporting caregivers. The next step was to set one overall aim statement that could help the team stay focused on their goals and help identify ways in which to measure progress. Team Fairlawn developed the following aim statement.

Aim: Within nine months, Fairlawn Hospital will have implemented a Caregiver Support Services Program and provided services to 100% of targeted caregivers and to the clinical care team.

What will improve: Caregiver support services at Fairlawn Hospital.

By how much: One hundred percent served.

By when: Within nine months.

For whom: At-risk of death and dying patients, their families, and their clinicians.

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