Research in the Field
- Access to Palliative Care
Hospital-based palliative care is increasing nationally (Dumanovsky et al., 2016).
- Two-thirds (67%) of hospitals nationwide have palliative care programs, an increase from 53% of hospitals in 2008; and a substantial increase from 15% of hospitals in 2001.
- Nearly all (90%) of hospitals with 300 or more beds have palliative care programs, as compared to about half (56%) of hospitals with fewer than 300 beds.
- Hospitals with 300 or more beds were 7.0 times as likely as smaller hospitals to have a palliative care program (95% CI 5.4, 9.1, p < 0.001).
- Sole Community Provider hospitals were significantly less likely than other hospitals to have a palliative care program.
- Predictors of palliative care programs within hospitals included region (New England, Pacific, and mid-Atlantic regions having the highest palliative care prevalence; the West and East South Central regions have the lowest) and tax status (not-for-profit hospitals and public hospitals were 4.8 times and 7.1 times, respectively, more likely to have a palliative care program as compared to for-profit hospitals).
When examined by medical specialty, palliative care reach is highest in surgery, followed by oncology and family medicine, and lowest in nephrology, followed by emergency medicine and neurology (Hughes and Smith, 2014).
Closed health systems are most likely to have complete service reach (Hughes and Smith, 2014).
- Kaiser Permanente, an insurer and provider of medical care, made palliative care standard in all areas for which Kaiser Permanente has a significant market share. The adoption was based on an RCT that demonstrated savings of $5,000-$7,000 per person (Smith et al., 2012).
- The Sutter Health Program of Advanced Illness Management (AIM), serving Medicare beneficiaries in northern California, is now system-wide. Expansion was possible through a grant from the Center for Medicare and Medicaid Innovation, based on the successful demonstration of a 54% reduction in hospital admissions, 80% reduction in ICU days, and 26% (2 days) reduction in inpatient length of stay. Physicians also noted a 52% reduction in visits, whereas home care had a 60% increase in hospice enrollment and a 49% increase in home health enrollment (Meyer, 2011).
- Gunderson Health System in Wisconsin achieved high community-wide penetration of advanced care planning (90% of patients having advance directives, with 99% of those directives available on admission to hospital) (Hammes, Rooney & Gundrum, 2010)
Outpatient and community-based palliative care services are less prevalent than services in inpatient settings. (Rabow, O’Riordan and Pantilat, 2014).In a statewide survey of adult and pediatric outpatient palliative care services among California hospitals:
- Of 136 hospitals with an adult palliative care program, only 18% (n = 24) had an outpatient program.
- Of 42 hospitals offering a pediatric palliative care program, only 19% (n = 8) offered outpatient services.
- Adult and pediatric outpatient palliative care services care primarily for patients with cancer, operate part-time with modest staffing, and are funded primarily by their institution.
- These figures have not changed significantly since 2007
Telehealth technologies are being used increasingly in rural and underserved areas to expand access to palliative care services.
- In their systemic review of the effect of telehealth interventions on caregiver outcomes, Zheng, Head and Schapmire (2016) found caregiver satisfaction to be associated with these programs. However, more research is needed to determine whether telehealth programs achieve high quality outcomes in other domains.
- A recent evaluation of a pilot videoconferencing project conducted among cancer patients in rural Alberta, Canada, Watanabe et al. (2013) found promising results in multiple domains:
- Scale scores for anxiety and appetite among patients were statistically significantly improved at the first follow-up visit (p < 0.01 and p = 0.03, respectively).
- Average per visit savings for patients seen by telehealth versus attending the cancer center were 471.13 km, 7.96 hours, and Canadian $192.71, respectively.
- Patients and referring physicians indicated a high degree of satisfaction with the clinic.
- Staffing and Workforce
Composition of the palliative care team depends on the system in which it is implemented:
- Within hospitals, the primary model of care delivery is the interdisciplinary consultation team. Large hospitals and mature programs may also include dedicated inpatient units. New service-delivery models and innovations include dedicated ICU teams, co-management models in which a palliative care specialist joins an existing specialty team (e.g., oncology), and triggers for automatic palliative care referrals (Kelley and Morrison, 2015).
- In the Kaiser Permanente system, where palliative care was made standard based on a successful RCT, the interdisciplinary team includes a physician, an advance practice nurse, a social worker and a chaplain. By contrast, in a more limited application of a palliative care model in the community-based US Oncology healthcare network, a physician and nurse practitioner were added to the oncology office (Hughes and Smith, 2014).
Few hospital palliative care programs meet national staffing recommendations (Spetz et. al, 2016):
- Only 25% of participating National Palliative Care Registry programs met the Joint Commission’s standard of including at least one physician, an advanced practice or other registered nurse, a social worker, and a chaplain, based on funded positions.
- Even when unfunded (in-kind or volunteer) positions were included only 39% of programs met the Joint Commission’s standards for palliative care team staffing.
- Larger palliative care programs were more likely than smaller ones to include a funded physician position, while smaller programs were more reliant upon advanced practice and registered nurses.
An inadequate medical and nursing workforce with expertise in palliative care is one of the greatest barriers to palliative care access; furthermore, growth in the number of hospice programs (and patients served) has rapidly outstripped growth in the number of trained professionals (Meier, 2011; Lupu, 2010).
- A shortfall of 6,000–10,000 palliative care specialist physicians and an equal number of advanced practice nurses is anticipated (Hughes and Smith, 2014).
- The most recent nationwide estimate of palliative care specialists is 4,400 hospice and palliative medicine (HPM) physicians. This is equivalent to 1 HPM physician for every 20,000 older adults with a life-limiting illness, and 1 HPM physician for every 11,000 Medicare deaths (Enguidamos, Vesper & Lorenz, 2012; Lupu, 2010).
Salaries and fellowships for hospital and palliative medicine (HPM) specialists may not be sufficient to attract high-caliber candidates (Hughes and Smith, 2014).
- Board certification is only available through fellowship training, yet fewer than 200 fellowships are available in HPM each year in the US.
Funding for palliative care research is limited (Hughes and Smith, 2014)
- Less than 1% of the National Institutes of Health (NIH) budget is dedicated to palliative care, although there have been substantial increases (240%) in NIH-funded investigators (now 294) and grants (now 391) since 2006.
Health centers and other care settings are developing and integrating different models or formulas to estimate staffing needs based on their own experience.
- Using a trigger-based model, Hua et al. (2014) found that one in seven ICU admissions met a single set of criteria for palliative care consultation. Using multiple sets of triggers, one in five ICU admissions (up to 20% of ICU admissions) met criteria for consultation.
More training is needed for primary care practitioners in order to reduce attitudinal barriers that impact primary and secondary palliative care (Hughes and Smith, 2014).
- Length of Stay (LOS)
ICU-based palliative care consultation may decrease hospital LOS (Aslakson et al., 2014).
- Of 14 interventions that measured hospital LOS, 8 found a decrease in hospital LOS associated with the intervention.
Early initiation of palliative care consultation may decrease hospital LOS.
- Early palliative care consultation in the emergency department was associated with a significantly shorter LOS for patients admitted to the hospital, by 3.6 days (p < 0.01), as compared to patients receiving a palliative care consultation after transfer from the emergency department to the ICU or the medical/surgical department (Wu et al., 2013).
- Mean LOS for the intervention and control groups were 4.32 and 8.29 days, respectively (p < 0.01), and LOS was consistently lower in the intervention group regardless of whether participants were in an acute palliative care swing bed or on a non-palliative care unit.
Home-based palliative care services may decrease hospital LOS.
- In a pilot study evaluating LOS among older patients receiving home-based palliative care during a six-month period as compared to those not receiving such services, the average number of hospital admissions was 0.35 versus 1.36 days (p < 0.001). Total hospital days were reduced by 5.13 for patients receiving palliative care (Chen et al., 2015).
ICU-based palliative care consultation may decrease ICU LOS.
- In a systematic review of 22 studies examining ICU LOS, Khandelwal et al. (2015) concluded that palliative care interventions consistently showed a pattern toward reduced ICU length of stay.
- A 26% relative risk reduction in LOS with palliative care interventions was detected overall.
- When restricting to palliative care interventions in the ICU setting that were directly targeted at the level of individual patients, the mean relative risk reduction was 33%.
- In a review of 21 interventions that measured ICU LOS, Aslakson et al. (2014) reported that 13 found a decrease in ICU LOS associated with the palliative care intervention.
- In nine of 12 studies that used an integrative model of palliative care, a decrease in ICU LOS was detected.
- In six of nine studies exploring the consultative model of palliative care, a decrease in ICU LOS was found.
- Due to methodological variation, it is not possible to detect whether the integrative or consultative model is more effective.
- Cost Savings
Inpatient specialist palliative care consultation teams have been found to be significantly less costly than usual care comparators in the range of 9%-25% for hospital costs, in a variety of settings and for various populations. (May, Normand & Morrison, 2014; Albanese et al., 2013; Armstrong et al., 2013; Starks et al., 2013; Wu et al., 2013)
- Recently, McCarthy et al. (2015) found overall cost savings from palliative care of $3,426 per patient for those dying in the hospital. No significant cost savings were found for patients discharged alive; however, significant cost savings for patients discharged alive could be achieved for certain diagnoses, palliative care team structures, or if consults occurred within 10 days of admission.
- In New York State, Tangeman et al. (2014) found that on average, cost per admission was $1,401 (13%) lower among patients receiving palliative care than comparison patients (p < 0.05). Cost reductions were evident within intensive care and laboratory services.
Provision of palliative care services may lower costs for all hospitalized patients receiving them.
- In a study of hospitalized patients at two Mayo clinic sites in Minnesota, costs were lowered for patients whether discharged dead or alive (Whitford et al., 2014).
- Costs for patients seen and discharged alive were US $35,449 (95% confidence interval [CI] US $34,157-US $36,686) compared to US $37,447 (95% CI US $36,734-US $38,126), without palliative care consult service (PCCS) consultation.
- Costs for PCCS patients that died during hospitalization were US $54,940 (95% CI US $51,483-US $58,576) and non-PCCS patients were US $79,660 (95% CI US $76,614-US $83,398).
- Among Medicaid patients in four New York State hospitals (2004-2007), on average, patients who received palliative care incurred $6,900 less in hospital costs during a given admission than a matched group of patients who received usual care (Morrison et al., 2011).
- These reductions included $4,098 in hospital costs per admission for patients discharged alive, and $7,563 for patients who died in the hospital.
- The authors estimated that reductions in Medicaid hospital spending in New York State could eventually range from $84 million to $252 million annually (assuming that 2 percent and 6 percent of Medicaid patients discharged from the hospital received palliative care, respectively), if very hospital with 150 or more beds had a fully operational palliative care consultation team.
Earlier palliative care consultation during hospital admission lowers costs and improves outcomes:
- May et al. (2015) found that earlier palliative care consultation during hospital admission is associated with lower cost of hospital stay for patients admitted with an advanced cancer diagnosis:
- Intervention within 6 days is estimated to reduce costs by -$1,312 (95% CI, -$2,568 to $56; p = 0.04) compared with no intervention and intervention within 2 days by -$2,280 (95% CI, -$3,438 to -$1,122; p < .001)
- These reductions are equivalent to a 14% and a 24% reduction, respectively, in cost of hospital stay.
- Scibetta et al. (2016) found that among cancer patients who died, early referral to specialty palliative care is associated with less intensive medical care, improved quality outcomes, and cost savings at the end of life for patients with cancer
- Per-patient costs in the early palliative care group was $19,067 versus $25,754 for patients in the late palliative care group (p < 0.01). Direct outpatient costs were similar in the two groups ($13,040 versus $11,549, p = 0.85).
- Early palliative care patients had lower rates of inpatient (33% versus 66%, p < 0.01), ICU (5% versus 20%, p < 0.01), and ED utilization (34%versus 54%, p = 0.04) in the last month of life than late palliative care patients.
Inpatient palliative care consultations result in cost avoidance.
- Starks et al. (2013) found that inpatient palliative care programs at two academic medical centers saved about $1.46 million for LOS under a week and about $2.5 million for LOS of 8 to 30 days.
- Among inpatient stays of 1 to 7 days, costs were lower for all palliative care patients by 13.0% ($2,141), and for survivors by 19.1% ($2,946). For stays of 8 to 30 days, costs were lower for all palliative care patients by 4.9% ($2,870), and for survivors by 6.0% ($2,487). Extrapolating the per admission cost across the PC patient groups with lower costs, these programs saved about $1.46 million for LOS under a week and about $2.5 million for LOS of 8 to 30 days.
- The average per-patient per-admission net cost saved by hospital palliative care consultation has been estimated as $2,659 (Morrison et al., 2008).
In hospitals that have dedicated palliative care units, transferring hospitalized patients to a palliative care unit results in cost savings (Smith and Cassel, 2009).
- For patients transferred to a hospital’s acute palliative care unit, Albanese et al. (2013) found cost savings even when conservative pre-transfer cost measures were used and when patients with varying diagnoses and discharge outcomes are included.
Hospice enrollment reduces hospitalization costs.
- Among Medicare beneficiaries, Kelley et al. (2013) found $2,561 in savings to Medicare for each patient enrolled in hospice 53-105 days before death, compared to a matched, non-hospice control. Even higher savings were seen with more common, shorter enrollment periods: $2,650, $5,040, and $6,430 per patient enrolled 1-7, 8-14, and 15-30 days prior to death, respectively.
Home-based palliative care within an Accountable Care Organization (ACO) was associated with significant cost savings (Lustbader et al., 2016).
- The cost per patient during the final three months of life was $12,000 lower with home-based palliative care than with usual care ($20,420 vs. $32,420; p = 0.0002); largely driven by a 35% reduction in Medicare Part A ($16,892 vs. $26,171; p = 0.0037).
- Home-based palliative care also resulted in a 37% reduction in Medicare Part B in the final three months of life compared to usual care ($3,114 vs. $4,913; p = 0.0008).
- Home-based palliative care resulted in a 35% increased hospice enrollment rate (p = 0.0005) and a 240% increased median hospice length of stay compared to usual care (34 days vs. 10 days; p < 0.0001).
Home-based palliative care may reduce care costs over time.
- For adult patients, Hopp et al. (2014) showed that home-based palliative care services are associated with reductions in health care utilization and reduced costs over time. Average 6-month costs per month significantly declined for patients older than 65 years of age from 1 HMO ($9,300 – $5,900, p = 0.001)
- For adult patients, a recent study found that home-based palliative care was associated with statistically significant reductions in total charges for hospital-based care, with reductions were more pronounced in the non-cancer group. Non-cancer patients with at least six months of palliative care exposure showed an average decrease in total hospital charges of nearly $275,000 (Postier et al., 2014).
Partnerships between community-based hospice providers and palliative care programs may achieve cost savings.
- Kerr, Donohue et al. (2014) showed cost savings in the last three months of life for palliative care enrollees in the amount of $6,804 per member per month (PMPM) versus $10,712 for usual care.
- During the last two weeks of life, total allowed PMPM was $6,674 versus $13,846 for usual care. Enhanced hospice entry (70% versus 25%) and longer length of stay in hospice (median 34 versus 9 days) were observed.
In-patient palliative care may reduce readmissions.
- O’Connor et al. (2015) found that hospitalized patients seen by inpatient palliative care had a lower 30-day readmission rate-adjusted odds ratio (AOR) 0.66, 0.55-0.78; p < 0.001) than patients who had no palliative care consultation. Consultations that involved goals of care discussions were associated with a lower readmission rate (AOR 0.36, 0.27-0.48; p < 0.001)
Home-based palliative care and home-based hospice care reduces the likelihood of readmission:
- Lustbader et al. (2016) found that home-based palliative care within an Accountable Care Organization (ACO) was associated with fewer hospitalizations. Hospital admissions were reduced by 34% in the final month of life for patients enrolled in home-based palliative care.
- A propensity-matched study comparing readmission rates among palliative home care patients to usual home care patients found that the 30-day readmission probability for palliative home care patients was 9.1%, as compared to a probability of 17.4% in the usual home care group (average treatment effect on the treated (ATT): 8.3%; 95% confidence interval [CI] 8.0%-8.6%). This effect persisted after adjustment for visit frequency. (Ranganathan et al., 2013)
- Enguidanos, Vesper & Lorenz (2012) found that patients discharged home with hospice had a 5% 30-day readmission rate, as compared to 8% among those discharged with palliative care. Patients discharged with no services had a 25% 30-day readmission rate.
- In western New York State, readmission rates were significantly lower among palliative care patients discharged with hospice care (1.1%) than comparison patients (6.6%), but significantly higher among palliative care patients discharged to other locations (12.1%) (Tangeman et al., 2014).
Receipt of inpatient palliative care (IPC) services reduces the likelihood of ICU readmission:
- In a hospital-based multicenter RCT, Gade et al. (2008) showed that patients receiving interdisciplinary palliative care services had fewer ICU hospital readmission (12 versus 21, p = 0.04), and 6-month net cost savings of $4,855 per patient (p = 0.001).
- In an observational study of 5 VA hospitals, Penrod et al. (2010) found that palliative care patients were 43.7% less likely to be admitted to ICU during the hospitalization than usual care patients (p < 0.001).
- Quality of Life
Inpatient palliative care has been found to improve QOL and symptom burden.
- Among patients over 65 years old at a Los Angeles medical center receiving treatment from an inpatient palliative care team, mean pain was significantly different between baseline (1.56 + 2.79) and two hours (0.91 + 1.59; p < 0.001), 24 hours (0.77 + 1.58; p < 0.001), and hospital discharge (0.40 + 1.09; p < 0.001). Mean pain 10 days after discharge (2.04 + 2.79; p < 0.001) was significantly higher than mean pain at discharge (Laguna et al., 2012).
- In a rural hospital setting, Armstrong et al. (2013) found a significant improvement in pain scores and symptom burden within 5 days of referral to the palliative care program.
- Among heart failure patients, Sidebottom et al. (2015) found that QOL scores increased by 12.92 points in the intervention group as compared to 8 points in the control group at 1 month (difference = + 4.92, p < 0.001). Improvement in symptom burden was 8.39 in the intervention group and 4.7 in the control group at 1 month (+3.69, p < 0.001).
Outpatient and home palliative care may improve patient quality of life.
- A meta-analysis of outpatient and home palliative care studies found that despite some methodological concerns, the current state of palliative care research supports the conclusion that early outpatient and home palliative care may improve patient quality of life (Davis et al., 2015).
- Rabow et al. (2013)’s review of the literature found that evidence is sufficient to conclude that outpatient palliative care can improve symptom control and quality of life. This review included four well designed, prospective, controlled studies, as well as a number of other studies demonstrating a positive effect.
- Among heart failure patients, new models integrating home-based palliative care and standard heart failure care have been shown to be effective in reducing both physical and psychological symptoms in patients (Enguidamos and Portanova, 2015).
- Kerr, Tangeman et al. (2014) found that among patients with life-limiting or serious illness enrolled in a blended outpatient/home palliative care program, symptomology improved in six of eight domains: anxiety, appetite, dyspnea, well-being, depression and nausea.
Home-based palliative care may increase the chance of dying at home and reduce symptom burden, in particular for patients with cancer (Gomes et al., 2014; Kerr, Tangeman et al., 2014).
Among patients with potentially curable cancer, palliative care may improve the likelihood that individuals will complete the treatment regimen.
- Cheville et al. (2015) demonstrated that patients undergoing chemoradiation who received a structured multidisciplinary QOL-directed intervention were significantly more likely to complete their chemoradiation as planned than patients who did not receive the QOL intervention.
- Quality of Care
Substantial evidence demonstrates that palliative care leads to better patient and caregiver outcomes. These include improvement in symptoms, QOL, and patient satisfaction, with reduced caregiver burden (Smith et al., 2012).
- Earlier involvement of palliative care also leads to more appropriate referral to and use of hospice, and reduced use of futile intensive care.
- In a comparison of early palliative care consultation to consultation after 3 months, earlier palliative care consultation led to improved survival rates after one year among the cancer patients in the study. Overall median survival was 18.3 months for the early group (n = 50) and 11.8 months for the delayed group (n = 59) (Bakitas et al, 2015).
Integration of palliative care into health systems has led to significant improvements in the quality of patient care while also reducing costs (Smith, Bernacki and Block, 2015; Kamal et al., 2014; Meier, 2011).
- According Smith, Bernacki and Block’s (2015) review of the literature:
- Multiple RCTs of specialist palliative care team interventions have shown improved outcomes, including improved quality of life, greater satisfaction with care, increased hospice utilization, reductions in family distress, and even improved survival.
- Inpatient palliative care services have been associated with improved communication between patients and doctors; enhanced patient perception of emotional support; higher patient satisfaction; and decreased pain, dyspnea, and nausea.
- Among cancer patients, Kamal et al. (2014) found that oncology care that routinely incorporated palliative care principles improved patient outcomes:
- Assessment of comprehensive symptoms, fatigue and constipation assessment, timely management of pain and constipation, and timely emotional well-being assessment were associated with highest levels of quality of life (all ps < .05).
- In a multivariate model (C-stat = 0.66), performance status (odds ratio [OR], 5.21; p = 0.003), estimated life expectancy (OR, 22.6; p = 0.003), conformance to the measure related to emotional well-being assessment (OR, 1.60; p = 0.026), and comprehensive screening of symptoms (OR, 1.74, p = 0.008) remained significant.
- In their study of cancer patients who died, Scibetta et al (2016) found that early referral for specialty palliative care for cancer patients resulted in improved performance on the National Quality Forum (NQF)’s End of Life (EOL) quality measures, with less aggressive medical care in the final month of life.
Palliative care in the ICU does not increase mortality.
- A review of 37 ICU-based interventions concluded that better palliative care in the ICU benefits patients, families and health care systems without increasing mortality (Aslakson et al., 2014).
Early palliative care may prolong life for some patient populations
- Bakitas et al. (2015) found that in comparing early to delayed palliative care consultation in hospital for cancer patients, the Kaplan-Meier 1-year survival rates were 63% in the early group and 48% in the delayed group (difference, 15%; p < 0.038).
- In a study of patients with newly diagnosed metastatic non-small-cell lung cancer, Temel et al. (2010) found that despite the fact that fewer patients in the early palliative care group than in the standard care group received aggressive end-of-life care (33% vs. 54%, p = 0.05), median survival was approximately two months longer among patients receiving early palliative care (11.6 months vs. 8.9 months, p = 0.02) and was accompanied by clinically meaningful improvements in QOL and mood.
Home-based palliative care has been shown to achieve diverse markers of quality.
- Irrespective of age, gender, and type of tumor, patients taken into care by the palliative home-care team were more likely to die at home, less likely to be hospitalized, and spent fewer days in hospital in the last 2 months of their life (Riolfi et al., 2014).
- Patient and Family Satisfaction
Patients receiving a hospital-based palliative care consultation rate the quality of care higher than patients who do not receive palliative care.
- Casarett et al. (2010) found that patients who received a palliative consultation had significantly higher scores for five of the six domains studied: information and communication (p < 0.001), access to home care services (p = 0.007), emotional and spiritual support (p < 0.001), well-being and dignity (p = 0.001) and care around the time of death (p < 0.001)
Inpatient palliative care services have been associated with improved communication between patients and doctors; enhanced patient perception of emotional support; and higher patient satisfaction (Smith, Bernacki and Block, 2015).
Communicating with the caregiver about palliative care may be instrumental to improving palliative care utilization among patients and families, as lack of information about palliative care may be a significant barrier to utilization (An et al., 2014).
Palliative care volunteers reduce caregiver burden. According Claxton-Oldfield (2015)’s review of the literature, the benefits of palliative care volunteers include:
- respite or breaks from the caregiving role
- emotional support
- advocacy and intervention with the professional palliative care team
- practical assistance with errands and other logistical matters
- spiritual/religious support, if desired
Among bereaved families, dedicated palliative care units may be associated with higher overall satisfaction and emotional support, as compared to a consultation service or usual care (Roza et al., 2015).
- Family members of patients who died on the Mt Sinai Medical Center palliative care unit were more likely to report that their loved one’s end-of-life medical care had been ‘‘excellent’’ as compared to family members of patients who received palliative care consultation or usual care (adjusted OR, 2.06; 95% CI, 1.17–3.61).
- Family members of palliative care unit patients also reported greater satisfaction with emotional support before the patient’s death (adjusted OR, 1.71; 95% CI, 1.01–2.90).
Among family members, earlier palliative care consultation has been associated with higher satisfaction with care (Casarett et al., 2008).
Palliative specialist consultations have been associated with reductions in family distress (Smith, Bernacki and Block, 2015).
- Metrics and Quality Assessment
This section provides a short overview of the current conversations about measurement. Comprehensive quality standards and indicators continue to be developed and tested for use in inpatient and outpatient palliative care settings. Many of these metrics follow from the work of the National Quality Forum (NQF) and the National Consensus Project (NCP), and align with the Centers for Medicare and Medicaid Services (CMS) reporting requirements.
Research continues across the palliative care field to explore a wide range of metrics that can accurately capture the breadth and depth of palliative care processes and associated outcomes. This section will be updated as research efforts continue to refine metrics for the field.
Among the eight quality domains for palliative care defined by the National Consensus Project for Quality Palliative Care (NCP, 2013), the most commonly addressed domains in the extant literature are the structure and process of care, and physical aspects of care. The least-addressed domains are ethical and legal aspects of care and care of the imminently dying patient (De Roos et al., 2014).
- A systematic review of quality assessment in the delivery of palliative care to cancer patients found that care often focused on physical manifestations of disease and adverse effects of therapy. Relatively little attention was given to the other aspects of suffering commonly observed among patients with advanced cancer, including psychological, social, and spiritual distress (Kamal et al., 2014).
There is great variety in the definition and application of hospital-based quality measures and standards for palliative care (De Roos et al., 2014; Davis et al., 2015; Ceronsky et al., 2015).
- Expanding the definitions of existing quality measures for palliative care and adapting them to local health systems will improve the quality of metrics and data collected (De Roos et al., 2014).
- Developing and utilizing standardized variables and definitions of terms will enhance the comparability of results and the generalizability of findings. Key questions for future exploration include (Davis et al., 2015):
- What is the optimal time to intervene with palliative care?
- What models of care are most effective for which populations and which disease types?
- What is the full economic impact of palliative care, including all medical and non-medical factors contributing to costs?
For community-based and rural settings, Ceronsky et al (2015) have proposed a distinct set of standardized measures tailored to those unique environments, including physical and spiritual health measures, to address pain/symptomology and quality of life; additional indicators/demographic categories, to address the reasons for initial consultation; and utilization information, to address the financial impact of palliative care programs.
- In a study of community-based palliative care for cancer patients, Kamal et al. (2013) underscored the importance of psychosocial assessment alongside symptom assessment in order to improve quality of life for patients seen in oncology practices. The researchers stressed that assessing emotional well-being independently from functional status is essential.
For home-based palliative care, Leff et al. (2015) developed new quality measures to more adequately reflect the unique nature and needs of patients who require home-based medical care than those that are currently endorsed by payers, quality organizations, and professional societies.
- The team identified 14 gap areas and developed measures tailored to those areas.
- In total, 10 quality of care domains, 32 standards and 20 quality indicators were developed, addressing home-based primary and palliative care.
- Pediatric Palliative Care
Pediatric Palliative Care Programs are becoming more common in children’s hospitals. However, there is evident variation across these programs (Feudtner et al., 2013).
- Of the 162 hospitals surveyed, 69% reported having a pediatric palliative care program, with the rate of creation of new programs peaking in 2008.
- Most of these programs only offered inpatient services during the regular work week and rely heavily on hospital funding.
- While the number of consults varied substantially, it was positively associated with hospital size and number of funded staff members.
Outpatient and community-based palliative care services are less prevalent than services in inpatient settings (Rabow, O’Riordan and Pantilat, 2014). In a statewide survey of adult and pediatric outpatient palliative care services among California hospitals:
- Of 42 hospitals offering a pediatric palliative care program, only 19% (n = 8) offered outpatient services.
- Outpatient palliative care services care primarily for patients with cancer, operate part-time with modest staffing, and are funded primarily by their institution.
- These figures have not changed significantly since 2007
For pediatric patients, palliative care may improve quality of life.
- Evidence from two studies that explored measures related to emotional and physical well being showed that palliative care for pediatric patients with life-limiting illness may improve quality of life for children and their parents. More research is needed in this area (O’Quinn and Giambra, 2014).
- In a survey of bereaved parents, Friedrichsdorf et al. (2015) found that children with cancer who participated in a palliative home care program were more likely than children who did not to have fun (70% versus 45%), to experience events that added meaning to life (89% versus 63%), and to die at home (93% versus 20%).
Pediatric palliative care (PPC) may have a measurable long-term impact on hospital use in seriously ill children.
- Hospital pediatric palliative care involvement may contribute to decreased hospital and ED use, without escalating costs. These outcomes are most evident in patients who survived two or more years following PPC enrollment. (Ananth et al., 2017).
- Home-based palliative care services may decrease hospital LOS. For pediatric patients, a recent study found that home-based palliative care was associated with statistically significant reductions in hospital LOS, with reductions were more pronounced in the non-cancer group. Non-cancer patients with at least six months of palliative care exposure showed a significant decrease in total LOS from pre- to post-program admission by an average of 38 days (Postier et al., 2014).