Desired care during the last phase of life

“Desired care during the last phase of life” A Transmural Multidisciplinary Palliative Care Pathway

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Palliative care potentially improves the patient’s quality of (end of) life and dying. However, in most countries palliative care is still considered to be suboptimal due to issues such as late identification of the palliative phase, moderate symptom control, and insufficient awareness and communication about patient needs and wishes. This results in a suboptimal quality of end of life care, low quality of dying, overburdened spouses, and both overuse and misuse of healthcare. In the southern part of the Netherlands, since December 2015 we have been implementing and pilot testing a pro-active, multidisciplinary transmural Palliative Care Pathway (called “Desired care in the last phase of life’’) with the objective to overcome the aforementioned issues.

The pathway is built upon eight relevant principles: 1) early and proactive identification of palliative patients (using the Surprise Question: ‘’Would you be surprised if this patient were to die within a year?” and two additional triggers: RADPAC and SPICT), 2) assessment at intake (all domains of palliative care: physical, social, practical, spiritual care, burden for informal caregivers, and the three most important wishes and needs for the last phase of life), 3) a weekly multi-disciplinary meeting with general practitioners (GPs), oncologists, geriatricians, pharmacists, spiritual care givers etc., to guide value based end of life wishes pro-actively (Advance Care Planning), 4) a timely conversation about end of life wishes and needs (shared decision making), resulting into a multidisciplinary care plan 5) a medication review, 6) good coordination and communication between intra- and extramural health care workers, covering the complete care cycle, 7) a postmortem interview with the informal caregiver(s), and 8) continuous monitoring of achieved outcomes (e.g. quality of dying).

Setting: the pathway pilot currently includes 13 Primary Care Facilities (PCFs) (plus seven PCFs in a control group), all medical specialists from the outpatient departments of oncology and geriatrics at the Zuyderland Medical Centre (ZMC) as well as nine pharmacistsWe have included all patients in intervention PCFs as well as outpatient departments meeting the Surprise Question’s criteria. Process and effect evaluations will be carried out continuously during the 2.5 year pilot using a mixed method intervention action design. The process evaluation was guided with interviews and focus groups with GPs, General Practice Based Nurse Specialists, Medical Specialists, Value Chain Coordinators EOLc, and with informal caregivers.

Results are constantly fed back to the project group, sharpening the implementation process. Effects of the intervention are measured both cross-sectional (assessment at intake and focus groups) and controlled (care burden for spouses, care utilization, (preferred) place of death, quality of dying, satisfaction with the end of life care provided). Results are preliminary. Process: An important barrier in inclusion appeared to be proactive end of life communication. After discussion in the project group, we held two communication teaching workshops. Another barrier was the perceived administrative burden of the pathway. Together with GPs and specialists we are currently implementing a digital communication platform for patients and caregivers, which is also suitable for continuous outcome monitoring.

Effects (outcomes and costs): Preliminary data indicate in the direction of: 1) better experienced quality of dying (patients accepted impending death and were ate peace); 2) more patients die at their usual place of residence instead of in the hospital; 3) proactive inclusion in the pathway, and anticipation on approaching death by GPs; 4) bearable burden for informal care givers; 5) good quality of care as reported by informal caregivers, through the patient’s eye 6) more intense communication between GPs and medical specialists and with patients.