The Cancer Supportive Care Model

A Patient-Partnered Paradigm Shift in Health Care Delivery

Elias Anaissie, MD; Tara Mink, RN

J Participat Med. 2011;3

Abstract and Introduction

Abstract

A cancer program specialized in treating patients with multiple myeloma developed a participatory care model. Various strategies were used to foster patient participation, including a) partnership in care management (treatment decisions and location of care; eg, hospital or outpatient unit), b) significant caregiver involvement (family and friends), c) patient/caregiver education and networking, d) emphasis on therapy in the outpatient setting, e) patient self-administration of intravenous and subcutaneous medications, f) a patient-initiated quality improvement program, g) an open access medical record policy and online access to test results, and h) uninterrupted access to program clinicians, even after discharge to another city or state.
An independent evaluation indicates this program is a US leader in the field of outpatient cancer therapy. This care model is well received by patients, caregivers, health care workers, and the hospital, and it is associated with superior clinical outcomes.
Broadly applied, this model could lead to a changing paradigm in health care delivery with major benefits to patients and lower costs for health care in the US.

Introduction

The authors describe a model of health care delivery for patients with multiple myeloma (MM) in which the patient is a partner and active participant, rather than a mere recipient of care. The authors compare this model to the care provided at various national institutions and report the positive results achieved using this participatory care model. Finally, the authors propose that the application of this model to other medical conditions has the potential to positively impact not only patient outcomes but also the cost of health care delivery.

Indeed, the cost of US health care continues to soar, with negative implications for the economic health of the country.^[3] Attempts to curb costs are now focused on rationing health care as done in the UK, including cost-benefit analyses of drugs and procedures by expert commissions, use of generic medications, and emphasis on primary care physicians for every citizen. These measures, however, did not prevent the doubling of the cost of the British health care system^[4] and have been associated with poorer outcomes; for example, the survival of patients with breast cancer treated in the UK is substantially lower than their US counterparts.^{[5 6]} Medicare has also recently instituted a system of penalites when certain benchmarks are not met (eg, as of October 1, 2008, Medicare no longer pays for what it considers "never events," ie preventable inpatient complications including pressure ulcers, falls, trauma, and others).^{[7 8]} Moreover, the latest health care overhaul was proposed without significant input from patients. Without buy-in from all stakeholders, even a great design can be doomed to failure. Fortunately, many patients have taken the initiative to become better informed and to participate in making decisions about their health, a move facilitated by the widespread access to credible online medical resources. But provider support for this important patient-initiated participation process is limited.

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Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.

Table 1. Patient and Caregiver Participation: The Focus of the MIRT Approach to Care Delivery.
Partnership in care management: Focus on caregiver involvement (family and friends) Participation in treatment decisions, including the location of care (hospital or outpatient unit) and review of the outcome of similarly treated patients Open access to patient's own medical records including instant and secure online access to test results Review of patient diaries with clinicians Self-administration of intravenous and subcutaneous medications Partnership in the quality of care through a patient-initiated quality improvement program Education of patients and caregivers using various resource centers Facilitating patient and caregiver networking through support groups with a focus on spirituality, sharing experiences and others Providing access [24/7/365] to the services of our clinicians including when patients are under the care of their local physician outside MIRT

Table 2. Patient – Partnered Care: Benefits of Outpatient Therapy vs Hospitalization.
	HOSPITAL	OUTPATIENT	COMMENTS
PATIENT DIGNITY
Response to calls for help, toileting needs, pain control, others.	Not always timely, especially with staff shortages.	Timelier when provided by loved ones	Feelings of powerlessness often accompany illness and hospitalization especially among patients with life-threatening conditions such as cancer. These feelings are exacerbated. when patients feel that their basic needs are unmet leaving them with a feeling of loss of dignity.
Dress code	Open back gowns do not preserve dignity.	Patients may dress as they wish.
PATIENT EMPOWERMENT
Control over their living environment	Loss with interruptions by various hospital personnel day and night	Mostly preserved. Patients have flexibility in scheduling to the outpatient visits according to their daily routine.	Control over one's schedule empowers and encourages the patient to take responsibility in scheduling the delivery of their care.
Self-medication	No	Yes	Self-administration of subcutaneous and intravenous medications allows patients to take ownership of their care.
SOCIAL SUPPORT
Family & friends	Disrupted because of limitations on visitation hours	Preserved; friends and family available at all times-as needed	Cancer patients experience feelings of anxiety and fear about their outcome. Hence, social support is a critical component of healing, particularly with current staff shortages. Caregiver involvement in and understanding of the care requirements for their loved ones ensures better understanding of and compliance with treatment plans after the patient returns home.
HEALTH CARE ENVIRONMENT
Food quality	Variable	Better, according to patient preferences	The health care environment can have a significant effect on patient satisfaction and experience. A quieter, friendlier, and personalized environment is more conductive to healing. Physical activity, good nutrition, and emotional wellbeing are critical for the successful outcomes of patients with cancer.
Noise level	High	Low
Physical and social environment	Unfriendly; hospitals have plain furniture, bland colors etc.	Usually friendlier; patients stay in their own home with their loved ones and pets can experience the outdoors, etc.
Physical activity	Limited because of space confinement	Enhanced because patients can move as needed, hence decreasing the risk of muscle disuse atrophy
Emotional well being	Affected because of space confinement, noise level, loss of control over activities including rest/sleep, etc.	Mostly preserved. Patients are free to go where they want, engage in social, cultural and or business activities, etc.
PATIENT SAFETY
Risk for cross infections and medication errors	Significant risk especially with staff shortages, overworked physician trainees, other	Reduced risk because of lack of exposure to iatrogenic conditions	Hospital – associated complications are a significant cause of morbidity and mortality [10]
LIMITATIONS OF OUTPATIENT THERAPY
24-hours nursing and physician care	Immediately available	Requires appointment or visit to emergency room
Burden on caregivers	Limited	Extensive	Some patients prefer hospitalization rather than putting excessive burden on their loved ones

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The Cancer Supportive Care Model

A Patient-Partnered Paradigm Shift in Health Care Delivery

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