Fig. 12.1
Heart failure trajectory and palliative care models
While HBPC models vary, much of the care and HBPC team composition mirror that of hospice. The interdisciplinary care team consists of a physician, nurse, social worker and allied professionals from other disciplines, including clergy, physical therapy, music therapy, and home health aides. Education provided by the team on disease progression and symptom management conveys critical information that enables patients and families to make informed care decisions and allows them to plan and prepare for symptom exacerbation and end-of-life care choices. Also key to this model is the focus on symptom management with support from a 24 h, 7-day-a-week call center. Through this readily available support system, seriously ill patients and their families can receive professional assistance whenever the need arises.
All HBPC services are provided in the home. The palliative care team begins by identifying the medical, psychosocial, and spiritual needs of the patient and family as part of a comprehensive interdisciplinary assessment. Working with the patient and family, the team develops an individualized care plan that outlines treatment, palliative, psychosocial, spiritual, and other goals in the care of the patient. The subsequent rate and frequency of visits is based on the care plan and the strides made in achieving the goals elicited. For example, the care plan may specify several nursing visits per week for a period of 2 weeks to stabilize pain and symptoms. Once this is accomplished, nursing visits may decrease to one or two a month or as necessary to maintain stability and compliance to care plan. Similarly, social work visits may begin with two per week to address family conflict issues around end-of-life care decisions, decreasing to one per month after resolution.
Although HBPC and hospice programs have similar features, the HBPC model varies from hospice care in several ways. First, care is provided further upstream in the course of treatment, with focus on the last year of life rather than the last 6 months. This allows earlier enrollment and increased benefit from palliative care. As a result of advance care planning, education, training in intervention techniques, and 24-h access to medical advice and care, the likelihood of crisis is reduced. Second, patients enrolled in Home-based Palliative Care are not required to make potentially difficult decisions to forgo curative efforts, as is required by the hospice program. Similar to hospice care, patients can maintain their primary and specialty physicians, however, under HBPC, patients also may continue to pursue aggressive measures. Health care is enhanced through coordination of care and care plans by the palliative care team with the primary care specialty physicians. Additionally, enrollment in the HBPC program is not meant as a substitute for hospice care. As the disease advances and symptoms worsen, the palliative care team provides referrals to hospice services in response to patients’ changing needs. Additionally, some patients may meet all criteria for hospice but simply do not want to be on a hospice program. The HBPC program can serve as a substitute for hospice for these patients, many of whom will elect hospice at a later time (see Table 12.1).
Table 12.1
Comparison of hospice versus home-based palliative care
Hospice care | Home-based palliative care |
|---|---|
Provided in last 6 months of life | Provided in last year or two of life |
Forego curative care; focus of care is palliative | May pursue curative care concurrent with palliative care |
Medicare and most insurances pay for all hospice care | Select palliative care services may be covered by Medicare and other insurances |
While recognizing that most individuals prefer to die at home, the HBPC program is also designed to take into account that not everyone has the same preferences for site of death. Thus, identifying and incorporating these preferences into the care plan is essential to the model. For cultural and personal reasons, some people are uncomfortable with having a death in the house and request transfer to a hospital or nursing facility when death is imminent. Since the primary objective of the HBPC program is to provide care consistent with patient and family wishes, care plans are established with the intent of following patient preferences.
As with preferred site of death, other life sustaining interventions are documented according to the desires of the patients. The goal of the palliative care intervention isn’t to “convert” the patient and family toward less aggressive care, even when aggressive care may appear futile to team members. Rather, the palliative care team provides comprehensive information on likely outcomes of life sustaining interventions, such as feeding tubes and resuscitation, including data from clinical trials and meta-analysis. In this way, patients and caregivers have access to all available information required to make an informed decision. As with hospice care, HBPC patients may elect to receive CPR, however under HBPC patients are not limited in the life sustaining interventions they seek. The goal of the HBPC team is to “honor patient preferences” once the patient and family have been educated about the likely impact of alternate care choices. See Text Box below for a case example of HBPC for a heart failure patient.
Home-Based Palliative Care Case Study
Robert Lewis, a 79 year-old male, was recently hospitalized for the third time in 6 months for an acute exacerbation of his heart failure (HF). He has been followed by his primary care physician for over 20 years but has found it difficult to keep outpatient appointments in the last year. Robert feels his HF has been under good control on Furosemide 20 mg daily. He also has diabetes mellitus and rarely checks his blood sugars but feels his diabetes is under good control as he is “never thirsty.” He had gained 8 lb in the 2 months between his previous hospital discharge and the recent admission.
Robert helps care for his 78 year-old wife, Marie, who has early signs of Alzheimer’s dementia. The couple lives in their home of 48 years. Their only relative is their daughter who lives in Michigan and hasn’t visited for the last 3 years. With his wife’s decline over the past few months, Robert has found it increasingly difficult to manage daily living activities. A neighbor volunteers to purchase prepared meals for the couple and looks in on them a few times a week. Robert wonders how he and Marie will manage as they get older and “don’t want to be a burden to their daughter.”
Care Opportunities
Hospice vs. Palliative Care. During his most recent hospitalization, the hospitalist suggested that Robert could qualify for hospice, but Robert felt he was not ready for hospice. A home-based palliative care (HBPC) program was offered to him with periodic home visits by a physician, nurse and social worker, which Robert accepted because he felt this would be beneficial.
Medical Management. The HBPC team instructed Robert on how to manage his heart failure. Although he had been told to check his weight daily, he never did this; his scale was old and he was unable to find it. The HBPC team encouraged him to buy a new scale and record his weight daily. If his weight increases more than 2 lb in 1 day or 3 lb in a week, he was instructed to notify the HBPC team. Since he still had 1+ edema in his ankles and a few scattered rales in the base of his lungs, the HBPC team determined his HF to be mild. His Furosemide was increased to 40 mg daily. His target or “dry” weight was determined to be 145 lb, with his current weight at 148 lb. Thus a goal was set to reduce his weight another 3 lb or until he has no more edema or rales. Although is current blood sugars were found to be satisfactory, Robert was instructed to check and record his random and fasting blood sugars a few times a week for review by the HBPC team.
Code Status. During his last hospitalization, the inpatient palliative care team met with Robert to discuss his concerns, goals, and aspirations for future care. He elected a “no code” and completed a POLST form indicating his desire for comfort care and a natural death.
Dietary Issues. Robert relied on his neighbor to purchase prepared meals for him and Marie. The HBPC nurse informed him that prepared meals are often high in sodium, which aggravates his HF. He met with a nutritionist who offered basic dietary counseling and the HBPC social worker provided a referral for home delivered meals, a healthier food option.
Social Issues. Robert’s concern about long-term care for himself and his wife, especially as her Alzheimer’s progresses, was addressed by the HBPC social worker who suggested they discuss future care needs with their daughter. His daughter agreed to visit in several weeks at which time the social worker will hold a family conference. Robert did state that he and Marie prefer to remain in their home, and that he would consider hiring someone to assist, at least a few hours a day to start.
Home Safety. The HBPC nurse discussed concerns she noted in the patient’s home including extension cords across walkways, throw rugs with uneven borders, and the need for grab bars in the bathroom.
Current Status
Robert has been receiving HBPC for 6 months. His health is stable and he has not been hospitalized. Although his wife’s health has continued to decline, they are managing well with the aid of a hired caregiver 5 days a week, paid for in part by Robert’s daughter.
Evidence for Improved Outcomes Among HF Patients
There is growing evidence supporting improved outcomes for patients with heart failure receiving HBPC. A recent study of home-based primary and palliative care for seriously ill homebound patients with heart failure and other conditions found that interdisciplinary palliative care visits along with home visits by specialists resulted in lower rates of pain, anxiety and depression, tiredness, and lack of appetite following enrollment [35]. Patient satisfaction with care has also been demonstrated in studies of HBPC [30], with those enrolled in HBPC reporting greater satisfaction as compared with individuals receiving usual care.
A nurse practitioner model of HBPC for HF and COPD patients in their last 2 years of life or less found patients receiving palliative care were better prepared to manage their health condition (and for, or at) end of life [36]. Intervention patients reported higher levels of preparedness for emergencies, having more information to handle them and knowing who to contact as compared with patients receiving usual care. However, HF patients receiving the nurse practitioner intervention reported greater distress than controls, perhaps an indicator of the need for a more intensive home intervention [36].
Studies have also demonstrated that HBPC can improve rates of home deaths for heart failure patients, an important outcome given that most adults prefer to die at home [15, 16, 20]. One study found that 87 % of HBPC patients died at home as compared to only 47 % of heart failure patients receiving usual care [37]. In multivariate models, those receiving HBPC were eight times more likely to die at home than usual care patients [37]. Meta-analysis of HBPC studies found that receipt of HBPC more than doubles the odds of dying at home [20].
Evidence for Reduction in Health Service Use
Evidence for reduction in medical service use among patients receiving HBPC is considerable. Interdisciplinary HBPC teams have documented reduction in emergency room visits hospital stays, with about 40 % fewer patients using the emergency room and hospitalized than those receiving standard medical care [30, 38]. These reductions in costly medical service use have resulted in overall reductions in health service ranging from 33 to 45 %. In examining HF specific outcomes, reductions in overall health care costs are even higher, with analysis finding costs of care for HBPC patients with HF 52 % lower than HF patients receiving usual care [37]. A HBPC consultation model using a nurse practitioner to provide home visits and collaborate with primary care also found fewer hospitalizations, hospital days, and lower overall costs of medical care in the 18 months following enrollment in care [39].
Receipt of HBPC has been found to reduce 30-day hospital readmissions among seriously ill patients, including those with heart failure [39, 40]. Among hospitalized patients receiving an inpatient palliative care consultation and subsequently discharged to home, those enrolled in home-based palliative care (8 % readmitted) or hospice (5 % readmitted) were significantly less likely to be readmitted than those discharged to home with no care (26 % readmitted) or a nursing facility (25 % readmitted) [40].
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