Care Coordination and Support
Health care is a complicated ecosystem—medically, financially and logistically. Co-creating health care requires a platform for coordination and navigation.
Care coordination improves the experience for patients and the health care team by:
- Improving communication with patients and caregivers
- Improving communications within the provider team
- Avoiding unnecessary or duplicative procedures
- Improving patient safety
- Assuring that patients have access to the full range of resources and services they need
Health care systems are moving towards this model. In the PAF Roadmap survey, when asked about the accessibility and use of an advocate navigator during their time at a cancer treatment center, 54 percent indicated that they had used this resource, and an additional 18.6 percent stated that they wished a navigator had been available to them.
The Goal Concordant Treatment Plan
The outcome of the shared-decision making process is a goal concordant treatment plan. This is a treatment plan that:
- Reflects the patient’s needs, values and preferences regarding the tradeoffs between benefits and risks of treatment options
- Spans the full range of care needs, including financial counseling and support, psychosocial support and palliative care
- Is captured digitally, in a dynamic way, so that patients and providers can track their progress, provide data and feedback related to their care goals
- Is readily accessible to, understood and digestible to the patient
Patient Goals and How They Change
Interview with Rachel Fournier
Why the Doctor and Patient Relationship is So Important
Interview with Rachel Fournier
The 2013 IOM Recommendation: 13 Key Elements
- Patient information
- Diagnosis, including specific tissue information, relevant biomarkers and stage
- Treatment goals
- Initial treatment and proposed duration, with specifics on drugs, procedures and surgery
- Expected response to treatment
- Treatment benefits and risks, including common and rare toxicities and ways to manage these side effects
- Information on quality of life and the expected impact on a patient
- Team members with responsibility for specific aspects of the patient’s care, including individuals not members of the primary care team
- Advance care plans
- Financial burden, including estimated out of pocket costs to the patient
- A plan for addressing the patient’s psychosocial issues
- A survivorship plan, including a summary of treatment information, recommended follow up and surveillance, and recommendations for overall health.
Palliative Care as a Person-Centered Model for Shared Decision-Making and Maximizing Quality of Life
Palliative care is an interdisciplinary, team-based model of care devoted to improving the quality of life by prioritizing and aligning services that relieve pain, symptoms, and distress while providing skilled communication about what matters most to patients and their families and well-coordinated and communicated care over the course of a serious illness. It is delivered at the same time as curative or disease-directed treatments as an extra layer of support for any age and any disease stage. Eligibility is based on patient and family need and not on prognosis.
Palliative care has been shown to reduce symptoms and enhance quality of life, improve doctor-patient-family satisfaction with care, enhance efficiency and effectiveness of hospital services, reduce healthcare costs, and in cancer patients, improve survival. Despite being a relatively new field, palliative care has become one of the fastest growing medical specialties, with more than 95% of all mid-large size hospitals in the US now having palliative care teams and models of palliative care delivery being rapidly created and disseminated in non-hospital care settings.
This expansion is in direct response to the increasing numbers and needs of adults and children living with serious, complex and chronic illnesses, and the realities of the care responsibilities faced by their families. Forward-thinking hospitals, health systems, health plans, and health professionals are increasingly recognizing the importance of palliative care’s contributions to care coordination, pain and symptom management, shared decision-making and person-centered goal setting as important complements to disease-directed treatment that help improve the lived experience for seriously ill adults, children and their families throughout the care continuum.
Ensuring reliable and equitable access for all adults and children needing palliative care to optimize their quality of life will require these key action steps in the context of the Roadmap:
- Patient and provider education to increase awareness of palliative care’s benefits;
- Primary palliative care skills core competencies training for all clinicians in all hospital and community care settings to equip them with basic skills in pain and symptom management and person-centered communication;
- Workforce initiatives to ensure sufficient numbers of palliative care specialists to teach healthcare trainees and practicing clinicians in the core knowledge and skills of palliative care, conduct the needed research to enhance the evidence base, and provide appropriate care for the most complex populations of seriously ill patients and their families.
- Research support to augment the current inadequate evidence base guiding clinical care.
The Importance of the Team
Goal-concordant treatment plans require a coordinated team approach and the involvement of the full health care team. Nurse practitioners, nurses, social workers and other members of the team often have more time to dedicate to discussions with patients and provide attention to a full range of issues and concerns. Patients recognize, rely on and appreciate these contributions.
The Role of non-Physicians in Providing Goal Concordant Care
Interview with Kathy Foley
The Critical Role of the Caregiver
Caregivers play a critical role in the shared decision-making process at many levels. They provide an important set of eyes and ears; they are often heavily involved in searching for and assessing information; they help inform the patient perspective and goals—in addition to providing physical and emotional care throughout the illness experience.
Keeping an Open Channel of Communication with the Caregiver
Interview with Rachel Grob
The Changing Role of the Caregiver
Interview with Shonta Chambers
Patient Reported Outcomes
Patients are often best qualified to assess whether a treatment plan is meeting their goals. Self-reported patient outcomes are an important complement to clinical measures, diagnostic tests, and physical examination.
The outcomes measured should be related either directly or indirectly to the goals most relevant to patients and span a period long enough to encompass the ultimate results of care. Data about the benefits, risks, and cost will help patients track their progress, problems and pitfalls along their journey, trigger care coordination and navigation interventions, and inform future decision-making activities. Patient reported outcomes (PROs) need to be shared among clinicians, patients, and families; and should be used to inform shared decision making with patients.