Massachusetts' Pediatric Palliative Care Network: Successful Implementation of a Novel State-Funded Pediatric Palliative Care Program

Abstract

Background:

U.S. children with life-limiting illness face barriers to accessing palliative care. In 2006, Massachusetts signed into law a statute providing for the creation and funding of the Pediatric Palliative Care Network (PPCN). This innovative, exclusively state-funded program provides comprehensive direct and consultative community-based pediatric palliative care services including: (1) pain and symptom management, (2) case management and assessment, (3) social services, counseling, and bereavement services, (4) volunteer support services, (5) respite services, and (6) complementary therapies. Provision of care is through a network of state-licensed hospice programs, and an array of professional and volunteer services.

Objective:

To describe Massachusetts' experience in implementing a novel pediatric palliative care program.

Design:

Enrollment and service trends were identified using Massachusetts Department of Public Health administrative data. Responses to a written family satisfaction survey provided to each family enrolled on PPCN are summarized.

Results:

In fiscal year 2010, PPCN partnered with 11 hospice programs to provide services to 227 children with life-limiting illness. A total of $680,850 (86.7%) of state funding went to direct contract funds for hospices. Admitting diagnoses included cancer (30%), chromosomal abnormalities (17%), neurodegenerative disorders (15%), and other (38%). There were 11 deaths, 100% of which occurred in the family's requested location. Median length of stay on service prior to death was 233 days. Families most commonly implemented psychosocial and case management services, followed by complementary therapies, and volunteer services.

Conclusions:

Successful implementation of a statewide pediatric palliative care program as modeled in Massachusetts is highly feasible at relatively low cost.

Introduction

Approximately 50,000 children die each year in the United States.^1–4 An additional 500,000 children suffer from life-limiting illnesses.^1–4 Of the 1.5 million children living in the state of Massachusetts, approximately 600 die annually.⁵ An additional 240,000 children in Massachusetts are identified as living with special health care needs. The proportion of these with life-limiting illnesses is unknown.⁶ This unique population of children and families requires the provision of compassionate and age-appropriate palliative care throughout the course of illness. Existing U.S. health policy fails to adequately provide for this need. In 2000, the American Academy of Pediatrics called for an integrated model of palliative care such that “the components of palliative care are offered at diagnosis and continued throughout the course of illness, whether the outcome ends in cure or death.”⁷ This call was emphatically echoed by the findings of the Institute of Medicine in 2003, which concluded that “children with fatal and potentially fatal conditions and their families fail to receive competent, compassionate and consistent care to meet their physical, emotional and spiritual needs.”⁸ Clinicians and policymakers assert that pediatric palliative care “should best intersect with the aims of curing and healing.”² That is to say, palliative care and disease-directed therapy for children are not mutually exclusive. Research in the adult population has demonstrated that palliative care prolongs patient life, improves quality of life, and decreases hospital costs.^9,10 Despite its potential benefits, pediatric palliative care is not yet integrated into the care of most children with life-limiting illness in the United States.

In 2006, as part of the state Health Care Reform Act, Massachusetts signed into law a statute providing for the creation and funding of the Pediatric Palliative Care Network (PPCN).¹¹ This unique, exclusively state-funded program is designed to overcome existing policy barriers and provide comprehensive direct and consultative palliative care services to children with life-limiting illnesses. This article aims to describe the Massachusetts experience in implementing this program with attention to both successes and challenges.

Formation of the PPCN

Driving forces behind the establishment of the PPCN included a state effort to address two central barriers identified by a grassroots community of parents of children with life-limiting illness: (1) requirement of physician certification that children have only 6 months left to live, and (2) loss of access to private duty nursing in the home setting.

These parental concerns reflect the U.S. reality that models for the funding and provision of pediatric palliative care are based upon adult policy. Pediatric and young adult patients under the age of 24 years account for a mere 0.4% of hospice patients in the United States.¹² Yet, rules governing eligibility, payment, and conditions of participation in the hospice benefit under both Medicaid and private insurance providers for children mirror the adult Medicare hospice benefit.¹³ These rules include a requirement that a patient be documented as having only six months to live—a provision that excludes a vast proportion of children with life-limiting conditions. Such children include infants with congenital anomalies typically fatal within the first 2 to 3 years of life, children with chronic diseases such as cystic fibrosis whose disease trajectory is often unclear, and children with diagnoses such as cancer for whom, in a majority of cases, cure remains a realistic hope. Until the mandate for concurrent care for children receiving hospice benefits under the 2010 federal Patient Protection and Affordable Care Act, eligibility criteria further required that for children to receive palliation under hospice, they must relinquish all disease-directed therapy.¹⁴ Implementation of the new mandate will vary from state to state, and continues to require eligible children to have a prognosis of six months or less. Thus, it remains to be seen to what extent the new provision will increase access to hospice for children.

In light of these limitations, individual states have experimented with models for the provision of comprehensive pediatric palliative care services. Beginning in 1995, $3.2 million in federal funding was earmarked for state demonstration programs—so called “waiver” programs—in pediatric palliative care. Three states—including Florida, California, and Colorado—received monies under the 1995 demonstration grant to create joint state and federally funded palliative care programs. To date, no published data are available on the Colorado or California programs.¹⁵ Florida has published its experience with the demonstration program developed in 2005 and titled Partners in Care: Together for Kids (PIC:TFK).¹⁶

In April 2006, the state of Massachusetts signed into law “An Act Providing Access to Affordable, Quality, and Accountable Care.” The Pediatric Palliative Care Program was established in Section 24K of Chapter 111 of the General Laws.¹¹ The statute provided for the creation and funding of a pediatric palliative care network administered by the Massachusetts Department of Public Health (DPH). Unlike prior Medicaid waiver initiatives, the program is entirely state funded. It is thus wholly independent from Medicaid, and beholden to no Medicare-derived eligibility or service provision regulations. Similar to Medicaid, PPCN is subject to government budgetary appropriations cuts. It does not, however, have the protected status of Medicaid programs and thus could in theory suffer complete dissolution in a fiscal downturn. Enrollment criteria for PPCN are intentionally more inclusive than the pediatric hospice benefit. As such, PPCN provides an alternative to the hospice benefit.

Program Design

The mission of PPCN is to serve the unmet physical, emotional, social, and spiritual needs of children in Massachusetts with life-limiting illnesses. The program is structured with oversight centered in DPH with provision of care by community hospices. PPCN is thus an enhancement and coordination of pre-existing services within the state. As such, it provides a model of care replicable in other states.

PPCN is a community-based program that provides services to families in their homes. It thus complements, but does not replace, existing hospital-based palliative care services. It is administered through the Massachusetts DPH Title V Children and Youth with Special Health Care Needs Program. PPCN receives an annual budget as voted and approved by the state legislature. PPCN contracts with a network of 11 state-licensed hospice programs throughout Massachusetts (Fig. 1). Each hospice receives a contract funded for a fiscal year, but develops its own budget reflective of services. State budgeting for individual hospices evolved over the lifetime of the PPCN. For the first two years of PPCN's existence all hospices were flat funded at $55,000 per year. Hospices with a higher census were then provided with contract amendments to meet higher costs at the conclusion of the third quarter. By 2009 the decision was made to link hospice contracts to census. Subsequent contract amounts were based on the prior year's enrollment numbers.

FIG. 1.

Distribution of hospices throughout the Commonwealth of Massachusetts. The geographic location of each hospice is depicted on the map by the number of children served in 2010. Notably, hospices are not distributed evenly throughout the state, with clusters in some counties.

Eligibility criteria

Eligibility criteria for enrollment on PPCN are intentionally broad. Enrollment on PPCN provides an alternative to enrollment on the more restrictive hospice benefit. To enroll on PPCN children must be residents of the state of Massachusetts, ages newborn until 19 years, and diagnosed as having a life-limiting illness as determined by a physician with no requirement regarding life expectancy imposed. Children enrolled on PPCN may continue to receive cure-directed care.

Children may be referred from any source, including family self-referral. All children referred to PPCN who meet the above three criteria are enrolled. Services are available to all eligible families regardless of ability to pay. PPCN is a payer of last resort such that services will first be reimbursed through private or government insurance with a palliative care benefit. Families lacking insurance coverage do not contribute out-of-pocket for program services.

Services provided

Service provision begins with a multidisciplinary assessment of a child and family by hospice staff within 48 hours of referral. A resultant formalized care plan is provided in writing to the family and primary care provider. Parents may choose to receive any of the PPCN services available through their hospice. For non-English speaking families interpretive services vary by hospice depending on resources. They range from interpreter phone services, to volunteer interpreters from within the local community. PPCN services are summarized in Table 1. PPCN services do not include provision of medications, durable medical equipment, personal care assistants, home health aides, or financial assistance. A child may continue to receive these services through her health insurance.

Table 1.

Pediatric Palliative Care Network Services

Case management

Collaboration with primary physician and other providers to coordinate care across all settings consistent with family goals.

Consultation with primary physician and other providers to offer information about the full range of clinical and educational services and resources available to the child, family and primary caregivers.

Collaboration with the primary physician and other providers to support and promote the normal growth and development of the child.

Pain and symptom management

Assessment provided by hospice nurses in consultation with primary physicians.

Social services and counseling

Support, psychosocial education, and counseling for child and family around child's life-limiting diagnosis, prognosis, associated anxieties, as well as advanced care planning.

Counseling for family members, including parents, grandparents, siblings and others providing physical, psychological, social, and/or spiritual support for the child.

Referrals to other community resources and services to support the plan of care for the child and family.

Volunteer services

Nonclinical support services by trained volunteers under professional supervision.

Respite services

Provided in child's home for up to 48 hours per year.

Complementary therapies

Include art therapy, music therapy, pet therapy, reiki, and therapeutic massage. A doctor's order must be obtained prior to provision of service.

Spiritual care

Consistent with family's cultural and religious values. The hospice provides support as requested with the family's choice of spiritual caregiver.

Bereavement services and pronouncement of death

Consistent with the laws of the Commonwealth of Massachusetts, pronouncement of death in the home for any child under the age of 18 must be made by the medical examiner. A hospice nurse is available 24 hours daily to come to the child's home and pronounce death in consultation with the medical examiner.

Bereavement services are provided for caregivers, siblings, and other family members for up to 13 months following the child's death.

Emergency care and planning

PPCN aims to prevent crises and unnecessary transfers/hospital admission. The hospice provides information, education and counseling to the family to prepare them for crises that may occur including unexpected pain and breakthrough symptoms.

24-hour emergency symptom management is part of PPCN services and care planning.

The regularly scheduled hospice on-call registered nurse provides coverage for after-hours emergencies.

PPCN, Pediatric Palliative Care Network.

Methods

Enrollment and service trends were identified using Massachusetts DPH administrative data. All PPCN hospices maintain medical records documenting care and decision-making for each enrolled child. Hospices submit electronic reports on a monthly basis to the DPH PPCN director. These reports are tied to invoice billing and include: cost of services for previous 30 days, census, referrals, deaths, discharges, and volunteer hours.

A written family satisfaction survey is provided to all families with the goal of facilitating programmatic improvements. This survey was designed by the PPCN director and is administered in person by a hospice staff member or volunteer after 3 months on service or following a child's death—whichever comes first. Surveys are currently available in English. Surveys are returned to the hospice, deidentified, and submitted to the PPCN director. Parents are asked to answer a total of sixteen questions spanning three domains. In two domains, survey questions assess the impact of PPCN services on a child's comfort, access to services, and parental comfort with caring for the child. In the final domain, questions assess the impact of PPCN on reducing the need for other medical services.

Results

Enrollment data

In fiscal year 2010, PPCN provided services to 227 children with life-limiting illness. This represented an 11% increase in census from the prior year. These children came from 224 individual families. The program also provided support services to 95 healthy siblings. Demographic characteristics of children and families are summarized in Table 2.

Table 2.

Demographic Characteristics of All 2010 Enrolled Children Number (%), n=227

Age
0–1	18 (8)
2–3 years	30 (13)
4–11 years	93 (41)
12–18 years	86 (38)
Female gender	99 (44)
Annual deaths	11 (4.8)
Location of death
Home	6/11 (54.5)
Hospital	5/11 (45.5)
Days on service prior to death median (range)	233 (35–1117)

Social Demographics of Current Families (January 2011) Number (%) n=187
Single-parent household	51 (27)
At least one parent unemployed	89 (48)
Parent also struggling with a health problem	38 (20)
Could not pay for funeral if child died tomorrow	76 (41)
DCF involvement^a	13 (7)
Homeless	2 (1)
Non-English speaking	19 (10)

The Department of Children and Families (DCF) is the Massachusetts state agency charged with the responsibility of protecting children from child abuse and neglect.

Approximately 10% of families spoke a primary language other than English—including Spanish, Portuguese, Japanese, Mandarin, Polish, Arabic, and Hindi. Race and ethnicity data were not collected.

As documented in DPH administrative records, in 2010 there were 11 deaths on service (4.8% of annual census) following a median length of stay on service of 233 days (Table 2). An additional 6 children were discharged to hospice and 4 of these children later died. One hundred percent of deaths occurred in the location requested by the family.

Children ranged in age from newborn through 18 years. The three most common diagnoses included approximately 30% malignancy, 17% chromosomal abnormality, and 15% neurodegenerative. Recent efforts to offer support to parents with a prenatal terminal diagnosis have resulted in the enrollment of three families. The largest referral source was the DPH Care Coordination Program which accounted for a full 37% of all referrals (Fig. 2). Families referred through DPH are typically receiving additional state services. Consequently, the social demographics of families served by PPCN reflect a truly underserved population (Table 2).

FIG. 2.

Breakdown of referral sources for all children enrolled on Pediatric Palliative Care Network (PPCN) in 2010.

Nonclinical service utilization

Nonclinical volunteer services constitute an essential element of palliative care. In 2010, volunteers provided a total of 2296 hours of care to families on PPCN. Nine of 11 hospices offered at least three complementary therapies. Percentage of hospices offering complementary therapies were as follows: massage therapy (82%), music therapy (73%), art therapy (64%), reiki (55%), and pet therapy (36%). Nearly all families whose child died participated in bereavement programs targeted at siblings. Of the numerous services available, families most commonly implemented psychosocial and case management services, complementary therapies, and volunteer services.

Cost

Since its inception in 2006, state funding for PPCN varied from $785,000 to $800,000 per fiscal year. Funding in fiscal year 2010 was $785,000 of which $680,850 (86.7%) constituted direct contract funds to hospices. An additional $42,000 (5.4%) went to community outreach and program marketing. This demonstrates a very low state administrative overhead. A breakdown of hospice use of these funds is presented in Table 3 and reveals a significant administrative overhead at the level of the hospices.

Table 3.

Hospice Allocation of Funds as Percentage of FY2010 $680,850 Provided by DPH, Dollars (%)

Nursing services	$120,671 (17.7)
Social services	$77,495 (11.4)
Spiritual care	$40,357 (5.9)
Complementary therapies	$31,659 (4.6)
Physician services	$28,203 (4.1)
Staff training	$27,988 (4.1)
Volunteer coordination	$20,286 (3)
Child life specialists	$11,312 (1.6)
Occupational/physical/speech/dietary	$6519 (1)
Therapists
Respite services	$3,210 (0.5)
Hospice administrative costs^a	$317,617 (46.3)

Includes: hospice program coordination, payroll taxes, fringe benefits, staff travel, clerical staff, facility maintenance.

DPH, Massachusetts Department of Public Health.

In 2010, individual hospice enrollment varied from 4 children to 50 children. Individual hospice contracts in 2010 reflect this range and varied from $14,300 to $127,000. This translates into a significant variation in the cost per child depending on the hospice—with a range of $1,520 to $7,421. Cost variability is in part reflective of hospice census and the subsequent diminution of overhead costs when census is increased.

Family satisfaction

As described in the methods section, DPH requires that all families enrolled on PPCN be offered a family satisfaction survey. In 2010, 36 of 227 families (16%) completed the survey. This limited response rate makes interpretation of results extremely difficult given the likelihood of responder bias. Family responses are summarized in Table 4. Of the sample who responded, a majority felt that their child received “excellent” care from PPCN and that PPCN improved their child's quality of life and access to resources.

Table 4.

Family Survey Responses, Number (%), n=36

Parents who rated the value of PPCN to their child and family as “excellent” (versus good, fair, or poor)	26 (72)
Families who believe their child “mostly” enjoys a better quality of life as a result of PPCN (versus sometimes, never, NA)	31 (86)
Families who reported “mostly” improved access to community resources as a result of PPCN (mostly, sometimes, never, NA)	22 (61)
Families who reported a “mostly” better understanding of their child's condition and how to manage symptoms as a result of PPCN (mostly, sometimes, never, NA)	19 (53)
Families who reported that PPCN services had “mostly” prevented visits to the emergency department (mostly, sometimes, never, NA)	11 (31)
Families who reported that PPCN services had “mostly” reduced the number of visits made to the doctor's office (mostly, sometimes, never, NA)	13 (36)

Qualitative Family Satisfaction Survey Responses

“Of the services you were receiving, which ones were most helpful?” n=30

“All the services from here were incredible…It helped to make the experience so much more bearable and having it at home made it more comfortable for all.”

“This has been such a pleasure for my child and has added such quality to her day and brought such happiness to her.”

“The home based therapy has been essential and a godsend! I don't know what we would have done without it.”

“Is There Something That You Feel Would Improve The Program For Other Families?” n=10

“The program will be better when you talk to the family with their own language.”

“Increased availability of respite care.”

“More money available for complementary therapy services.”

“It would be wonderful if the program could continue beyond 19 years.”

PPCN, Pediatric Palliative Care Network; NA, not applicable.

Provider assessments

PPCN additionally relies on annual feedback from its hospice providers to identify successes and programmatic challenges. Feedback is collected as an open-ended survey. Many hospices identified maintenance of adequate census, and the need to “educate families and referral sources that palliative care IS NOT hospice care” as challenges. Additional challenges included meeting the needs of families struggling to pay bills and provide for the basic care of their children (including housing and food), as well as communication barriers with non-English speaking families.

When asked to identify goals for the coming year, many hospices focused on service expansion. One hospice is developing a community education program to aid in efforts to reach more children. Another hospice described multiple initiatives: development of a monthly newsletter for families, and pursuit of grant funding for “quality of life programs” including recreational family outings and funds to support such basic needs as utilities and rent.

Discussion

Massachusetts has implemented an exclusively state-funded, community-based pediatric palliative care program. The program's aim was to ameliorate overly restrictive eligibility criteria as a barrier to access. The fact that fewer than 5% of children on service died in the past year speaks to the reality that PPCN is truly meeting the goal of the American Academy of Pediatrics in providing compassionate palliative care “throughout the course of illness, whether the outcome ends in cure or death.”⁷ As such, the program has proved successful. Furthermore, that 100% of those children who died did so in their families' location of choice is evidence that this compassionate care is benefiting families.

These successes notwithstanding, PPCN has faced several challenges over its first four years of existence. Enrollment trends proved both surprising and challenging. At its inception in 2006, approximately 400 children were estimated to be dying annually in the state of Massachusetts of nontraumatic causes—this was PPCN's target population.¹⁷ Initial expectations were that loosened eligibility criteria would allow the state to capture a greater proportion of children with a steadily declining disease trajectory, and anticipated death over 6 to 12 months. As evidenced by the extremely low rates of death on service, it has become clear that a different population of children with life-limiting illnesses is being captured—and it seems to be a far larger one. This population is one whose disease trajectory is more chronic. No good data exist on the number of Massachusetts children experiencing “life-limiting illness” with chronic trajectories. Furthermore, data on the number of children enrolled on the hospice benefit are not available. This poses a significant barrier to program evaluation, making it impossible to measure the success of PPCN in capturing this population. A greater epidemiologic understanding of this eligible population is essential for programmatic evolution, as is the need for more comprehensive data collection on the population currently served by PPCN—including information on race, ethnicity, and insurance status.

Identification of appropriate children for enrollment, and variability in strategies for outreach by individual hospices proved particularly challenging as evidenced by significant variation in enrollment hospice to hospice. This variation is partly responsible for a seven-fold difference in cost per child between the highest and lowest census hospices by the end of 2010. Efforts to standardize costs across providers are ongoing, and DPH is currently projecting a move to a unit rate reimbursement by fiscal year 2013. This effort would ideally result in a more consistent cost per child, and encourage individual hospices to modify their outreach practices.

From a global programmatic perspective, overall enrollment on PPCN has steadily increased each year. State funding, however, has remained static. The exclusively state-funded nature of the program, and its availability to all families regardless of insurance status or ability to pay, are both strengths and weaknesses in terms of program model. As a relatively wealthy state, Massachusetts has demonstrated both an ability and willingness to expand the provision of palliative care to more children in line with American Academy of Pediatrics and National Institutes of Health goals. Less wealthy states might be challenged to implement similar programs. Future efforts to collect data on comparative cost expenditures between children enrolled on PPCN, those with similar illnesses receiving the hospice benefit, and those with similar illnesses not enrolled in either program will be essential to demonstrate the fiscal viability of this model for other states.

Finally, the program has had limited success in collecting comprehensive family satisfaction data. Response rates of less than 20% from participating families provide inadequate data on which to assess the success of the program in meeting the needs of its patients. Future efforts to increase response rates, and gather more quantitative measures of quality—including pain and symptom management, spiritual/emotional support, and preferred location of death—are necessary for systematic evaluation of PPCN.

Conclusions

Policies defining broader palliative care eligibility criteria for reimbursement under health insurance programs are essential to achieving improved care. The current federal health care reform bill goes as far as allowing children to receive concurrent palliative care and care with curative intent, but does nothing to ameliorate the overly restrictive requirement that children have only six months to live.¹⁴ Massachusetts has created what appears to be a sustainable model to comprehensively meet the needs of its children with life-limiting illness. Whether models incorporating the inclusive eligibility requirements and breadth of services available under PPCN can be replicated in other states remains to be seen.

Footnotes

Acknowledgments

The authors express their gratitude to the providers, families, and children on PPCN.

Author Disclosure Statement

No competing financial interests exist.

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