The Common Sense Guide to Improving Palliative Care > Caring for Caregivers > 6.6 Measuring Your Success
Caring for Caregivers: Measuring Your Success
Tracking progress is key to understanding the effects of your efforts. It is also important when you need to tell your story to administrators and colleagues, often to gain their support. Whatever your aim, three basic measures (see Chapter 2, Basics of Quality Improvement, for more details) are the kinds of things you will count to determine the following.
- Whether you are implementing your changes systematically and appropriately (system process measures).
- Whether you are improving care (patient and family outcome measures).
- Whether your changes are causing unintended or negative consequences (adverse-effect measures).
Your team needs to decide which data to collect, who will be responsible for collecting it, and how often to collect it. Depending on how big your patient population is, you might want to establish a sampling plan to get unbiased, yet manageable, data. You also need to figure out how to display your data: daily, weekly, every two weeks, monthly, or quarterly. Weekly measurement is best, as it provides quick turnaround of information to track progress, but be sure you have enough patients to do so (usually, five patients per week are enough to measure weekly). If you have too few patients to measure weekly, then try every other week. Only measure those things on a quarterly basis that are long-term outcome measures or that can only be collected quarterly. In addition, be sure to collect enough data to build your case (or to see quickly when an improvement is not working).
The team identified the following sub-aim.
Sub-aim: Within six months, 100% of families/caregivers of patients who are at-risk of dying in our medical/surgery ward will have participated in an enhanced family conference/team meeting, within 72 hours of admission, with the multidisciplinary clinical care team.
Consequently, Team Fairlawn decided to track the following measures.
Process measure: Percent of target patient families for whom the enhanced multidisciplinary team/family meeting was conducted within 72 hours of admission to the ward.
Outcome measure: Percent of the target patient families participating in the enhanced multidisciplinary team/family meeting who express satisfaction because the team did the following:
- Provided clear, comprehensive information on the patient's current clinical status, prognosis, potential treatment choices (including palliative care), and survival issues.
- Discussed the possible use of time-limited trials for aggressive treatments and the criteria to establish when to stop them.
- Had a discussion with the patient and/or family resulting in a plan of care, with treatment goals; advance care plans for all likely contingencies; and a time frame for treatment trials.
- Offered the family Caregiver Support Services (including basic logistics information, access to social services and clergy, volunteer support, 24/7 access to the patient, and the "Caregiver Comfort Care Cart"), and provided written materials on these services for future reference.
- Gave the family a packet with information on facility protocols, local resources, referral services, local lodging, restaurants, and volunteers.
- Identified a single person on whom the family could rely for continuity of information.
- Ensured that clinicians spoke to families and caregivers respectfully, in clear language, that they provided sufficient time for the meeting, and that they listened to each family's concerns and values and made each family feel part of the team.
- Made certain that families found these meetings helpful or very helpful in understanding their loved one's medical situation, treatment options, and what they might expect next.
- Adverse-effect measure: Percent of the target patients' families participating in the enhanced multidisciplinary team/family meeting who expressed greater confusion, anxiety, depression, or other negative feelings because of the meeting and/or who expressed that many of their questions remained unanswered and unsettled.
To address other components of the project, a few team members also focused on reviewing and collecting baseline data on how family meetings were currently conducted by staff on the medical/surgery ward. They sampled five team meetings over the course of a week to observe the interaction and take notes on the content of information provided to families. They then asked families to describe what they had learned in the meetings and what questions
they had. Another group of team members reviewed all printed materials that the medical/surgery ward currently gave to family members about local resources. (Many patients and caregivers came from surrounding areas and were unfamiliar with the city.) A third group collected baseline data on 15 recently deceased patients in the medical/surgery ward and studied what kind of advance care planning had been documented in each patient's record and whether the patient's and family's wishes were honored. They spoke to 10 caregivers of deceased patients to ask them about the experience and how the facility might have helped them more. They agreed to meet again in one week with results from their baseline data collection to review the information and identify next steps.
Following are some other examples of measures of caregiver support measures:
Process Measures
- Family members who participate in an enhanced clinical team/family conference meeting within 72
hours of the patient's admission.
- Clinical team/family conference meetings in which standardized guidelines, protocols, forms, and scripts for clinicians developed to enhance the meetings were used.
- The number of times that caregivers called the 24/7 access number for information or advice in a crisis and who received a prompt response (e.g., within one hour).
- Caregivers' needs assessed using a brief, standardized tool.
- Caregivers with identified needs promptly referred to an appropriate service provider or providers (e.g., for counseling, support groups, clergy, financial assistance, etc.) and followed up within 48 hours of referral.
- Caregivers able to identify the clinical team contact provider.
- Caregivers who received a follow-up bereavement contact within three months of a loved one's death and who were assessed for bereavement adjustment.
- Staff participating in facility-sponsored grief/bereavement support services.
- Caregivers provided with palliative and supportive care.
Outcome Measures
- Caregivers participating in the enhanced clinical team meetings or family conferences who were satisfied with the process using program-specific satisfaction measures.
- Caregivers who found family conferences helpful or very helpful in understanding their loved one's medical situation, treatment options, and what they should expect.
- Caregivers provided with respite care or psychosocial/spiritual support services who state that such services were very helpful.
- Caregivers using the "comfort care cart" or "family room/kitchen" who stated that these services were very helpful during their loved one's illness.
- Caregivers who say that they knew what to expect and had no surprises during the patient's final illness.
- Caregivers receiving education and training for patient management in the home who say they felt
confident that they knew what to do, what to expect, and whom to contact with questions.
- Caregivers and staff attending a facility-based memorial service for recently deceased patients who
state that the program was helpful to them.
- Caregivers referred to and followed up with by facility clergy for spiritual support.
- Caregivers provided with palliative/support care who state that the services were helpful.
Adverse-Effect Measures
- Caregivers who find the clinical team meeting or family conference troublesome or painful.
- Staff who stated that providing enhanced caregiver support services added a significant burden to their workday.
- Staff who stated that using QI strategies to improve clinical care added a significant burden to their workday.
- Patients who are hospitalized or placed in the facility who do not receive Advance Care Planning (ACP) discussions
within 72 hours of admission.
- Staff who stated that they felt unprepared to handle the family conference due to inadequate preparation or training.
- Caregivers who felt unprepared for a transition to the home or for how to manage once their loved one was home.
- Caregivers who stated that managing care for their loved one after discharge increased their anxiety, depression, or burden.
This extract from the online edition of The Common Sense Guide to Improving Palliative Care is used with permission.