The Madison Clinic: Evaluation of a collaborative outpatient paediatric palliative care clinic

Abstract

BACKGROUND

A multidisciplinary outpatient clinic at a tertiary care children’s hospital supported and staffed by a children’s hospice was created to enhance and expand the inpatient palliative care services available to families of children with life-limiting conditions. This clinic was created with input from clinicians, program leaders and families in developing the goals and format.

METHOD

The clinic was evaluated with indicators that included program data from palliative care consultations. This information was collected and recorded on a prospective basis.

RESULTS

In the first 29 months of operation, 43 clinics were held, 39 individual patients were seen and there were 59 visits. The majority of visits were for pain and symptom management (75%), while 20% were for assessment for the hospice program. The hospice-palliative care team also provided telephone support, videoconference support and inpatient consultations. Patients reported overall satisfaction with their experiences at the clinic.

DISCUSSION

A major benefit of this outpatient palliative care clinic is its ability to offer continuity of care for patients and their families. It also serves as a preliminary introduction to palliative care, particularly significant for families who are not yet ready to learn about or engage in the full hospice program.

BACKGROUND

Paediatric palliative care is defined as care that focuses on the enhancement of the quality of life for children and families who live with progressive life-limiting conditions. This care is provided through a combination of active and compassionate therapies intended to comfort and support the child and his or her family (1,2). Palliative care in children differs from adult palliative care in several ways – many of the conditions are extremely rare or specific to childhood; the condition may be familial in nature and, therefore, there may be more than one affected child; and care must address the continuing physical, emotional and cognitive development of the child, reflected in their communication skills and ability to understand their disease and death. Trajectories and prognoses are often difficult to predict in children. Highly flexible care that introduces palliative care early in the trajectory, encompasses family and caregivers, and provides a link to community services should, therefore, be available to meet the multifaceted needs of this population.

Research has shown that early introduction of the concept of palliative care may facilitate the transition (3). Some children engage with palliative care services near the time of diagnosis, and continue through the end of their life trajectory, when symptom management can make a difference in the quality of life (4). Other children, especially those living with cancer, continue to pursue potentially curative treatments even when working with a palliative care team (3). These characteristics inherent in the paediatric palliative approach result in complex care involving multiple caregivers, both professional and nonprofessional. Coordination of care is, therefore, a major issue with children who are cared for in many settings including home, hospital, hospice and community care facilities. It is well recognized that the delivery of optimal palliative care requires a coordinated interdisciplinary approach (5).

In a setting with a free-standing children’s hospice facility and a tertiary children’s hospital, several gaps were identified by a group of clinicians, program leaders and families in the provision of paediatric palliative care. One issue was that acute symptom management was undertaken during inpatient admissions at the hospice or at the hospital, but there was no mechanism for complex palliative symptom management for outpatients. Second, families in hospitals identified that the unfamiliarity of the hospice was a barrier to their exploring the concept of palliative care. Third, it was identified that a challenge to the hospice/palliative care referral-intake process was the need to locate information in the hospital charts, laboratory reports and imaging studies, which would help to understand a particular child’s condition. It was hypothesized that an outpatient clinic, collaboratively run by the hospice and the hospital, could address these gaps.

In the adult literature, there are several examples of out-patient consultative clinics in palliative care. The Cleveland Clinic World Health Organization Demonstration Project (USA) included hospice, inpatient services and an outpatient clinic in its model (6). Rabow et al (7) conducted a one-year controlled clinical trial, in which 50 intervention patients with advanced congestive heart failure, chronic obstructive pulmonary disease and cancer received multiple palliative care interdisciplinary team consultations for pain and symptom management, advance care planning, psychosocial support and caregiver training. This intervention group was compared with 40 control individuals who received standard care. The intervention group reported better outcomes in some areas (dyspnea, sleep, anxiety and spiritual well being) but not in response to depression or pain. Casarett et al (8) reported on the experience of a palliative care clinic for outpatients not well served by existing structures of care, such as a hospice or a palliative care consultation service.

Paediatric palliative care programs have been described previously either as providers of care via free-standing children’s hospices, community outreach or as teams in children’s hospitals; there are no reports of outpatient clinics serving this population (9–14). Dangel (15) reported on the status of paediatric palliative care in Europe. Data were collected from a survey and national reports yielding information on programs in 24 countries. Paediatric palliative care was available for the whole population only in Belarus and the United Kingdom, and occurred in a variety of program settings – adult hospices providing care to children, free-standing children’s hospices, inpatient palliative care services in children’s hospitals and respite care programs. There was no description of an outpatient clinic at any of the centres. The Madison Clinic appears to be the first such clinic. It may serve as a model for other programs, including the four new children’s hospices (Roger’s House, Ottawa, Ontario; Darling Home for Kids, Milton, Ontario; Le Phare/The Lighthouse, Montreal, Quebec; and Rotary/Flames House, Calgary, Alberta) either recently opened or under development in Canada.

The present paper reports on the first 29 months of operation of an outpatient paediatric palliative care clinic, located in a tertiary children’s hospital and collaboratively operated by a free-standing children’s hospice.

Setting

Canuck Place Children’s Hospice (CPCH) was established in 1995 in Vancouver, British Columbia. The hospice provides end-of-life care, pain and symptom management, family care/respite and bereavement support to children and families with life-limiting conditions. The hospice has nine beds with four family suites, and provides clinical care to more than 200 children and families with life-limiting conditions, while more than 100 families receive bereavement support. Diagnoses of children on the program reflect the full spectrum of progressive life-limiting conditions affecting children (4,16). The BC Children’s Hospital (BCCH) and the Sunny Hill Health Centre (SHHC) in Vancouver are provincial health services authority agencies, and are the province’s main tertiary care facilities for acute and chronic child health care, respectively. The BCCH has 142 beds with 42,000 inpatient days and 168,000 outpatient visits per year. The BCCH and the SHHC do not have program-wide palliative services; instead, the CPCH physician-nursing team provides paediatric palliative care consultations for patients admitted to the provincial tertiary-care paediatric facilities. The CPCH and the BCCH are 1.5 km apart and before the establishment of the outpatient clinic, there was a history of close interaction between the two facilities.

METHODS

Clinic program description

The vision of the clinic was to support the continuum of care for the children and their families living with progressive life-limiting conditions (both cancer and noncancer diagnoses). The clinic was proposed to address gaps in care currently perceived by families by enhancing the current inpatient palliative care services at the hospice and the hospital by providing a setting for outpatient consultation. To realize this vision, a multidisciplinary outpatient clinic at the children’s hospital, with both scheduled and flexible outpatient evaluation, was developed. Input was sought from clinicians, program leaders and families in developing the program goals and format.

The objectives of the clinic are as follows:

• To provide a vital link for family and caregivers to the continuum of palliative services being offered in both the hospital and hospice facilities;

• To support an early introduction of palliative care services and team to children and families within the familiar setting of the hospital;

• To help integrate palliative care to clinics that do not currently use the services either in-hospital or in-hospice;

• To provide a geographical ‘home’ in the hospital for the hospice-palliative care team, enabling easier consultation with other clinical services, and be a teaching location for trainees; and

• To optimize and leverage the existing resources including palliative care physician time and clinic space at the children’s hospital.

Formal clinic sessions are held twice each month in the hospital’s outpatient building. The clinic is staffed by a paediatric palliative clinical nurse specialist (CNS) from the hospice and by paediatric palliative physicians. Because families cannot always travel to the hospital on the day that the palliative clinic is held, and because distances and transportation barriers in the region are significant, telephone, videoconferencing (Telehealth) and flexible scheduling in the medical day unit or at referring subspecialty clinics, also occurs. Clinic space, management and clerical support are provided by the hospital. Information from clinic visits is entered on both the hospital and hospice health record. A paediatric palliative CNS is available for the program five days a week. A physician from the hospice is always on-call for palliative care inpatients and outpatients.

Start-up funding for the clinic was obtained through the generosity of a family whose child received her disease treatment at the BCCH and palliative care at the CPCH. It was thought that a neutral name would assist families who were uncertain about the role of palliative care in their situation, and who might be uncomfortable going to the ‘palliative clinic’. Naming it the ‘pain’ or ‘symptom clinic’ would have created confusion with existing programs, and also may have masked the purposes of the clinic in a different way. Therefore, the clinical program was simply named for the child whose family provided the donation, and is called the Madison Clinic in her honour.

Program evaluation

Similar to the approach by Oliver (17) in the development of an interdisciplinary outpatient palliative care clinic for adults, criteria for evaluation were agreed on before the clinic opening. Few paediatric palliative care programs of this nature exist or have been evaluated from which to draw evaluation criteria or to benchmark. The evaluation indicators included program data and palliative care consultations for hospitalized patients. Data were recorded on a prospective basis and maintained in a simple database. A survey was mailed to families requesting their anonymous feedback as part of the program evaluation process. This program evaluation met the criteria as established by the BCCH and the CPCH.

RESULTS

Clinic activity during the first 29 months of operation is shown in Table 1.

TABLE 1.

Clinic activity between November 2005 and March 31, 2008. Number of patients shown in parentheses

Number of clinic visits	59
	Four visits conducted by Telehealth (videoconference)
Number of children seen	39
	One-time visit: 77% (30)
	Repeat visits: 23% (9) seen in clinic between two and seven times each
Source of referrals (percentage of referrals)	Palliative clinicians: 73% (includes referrals to hospice from other health care professionals redirected by the CPCH to the clinic)
	Hospital subspecialists: 14%
	Community paediatricians: 5%
	Family self-referral: 8%
Percentage of children on hospice program (at first clinic visit)	Already on the CPCH program: 56% (22)
	Not yet on the CPCH program: 44% (17)
Reason for referrals, (percentage of visits)	Pain and symptom management: 75% (44)
	Assessment for CPCH program: 19% (11)
	Other reasons: 7% (4): review of autopsy results, discussion of advance directives/levels of intervention, community care planning, equipment teaching
Catchment area	Less than 200 km from hospice/hospital: 82% (32)
	More than 200 km from hospice/hospital: 18% (7)
Diagnostic category	Cancer: 5% (2)
	Cardiopulmonary: 5% (2)
	Central nervous system condition: 36% (14)
	Chromosomal/multiorgan syndromes: 13% (5)
	Metabolic/biochemical: 23% (9)
	Immunological/infectious: 0% (0)
	Neuromuscular:18% (7)

CPCH The Canuck Place Children’s Hospice, Vancouver, British Columbia

Because the clinic was new, most of the initial referrals (73%) came from the hospice physicians and nurses, sometimes as follow-up to a hospitalization or a hospice stay, and sometimes for first evaluation of a new patient. Just over one-half of the patients (56%) were already on the hospice program at the time of referral to the clinic, while the other 44% were not yet on the program. A majority of the clinic visits were for pain and symptom management (75%). The diagnoses of the children seen in clinic reflect, in part, the hospice program census, with a large number of children with central nervous system conditions, multiorgan syndromes and metabolic/biochemical diseases. The small number of children with cancer likely reflects the fact that many of these children receive their symptom care within the oncology program clinic/inpatient service, and tend to be referred to the hospice for end-of-life care, rather than respite/family care or pain and symptom management. The CNS provided telephone follow-up after the clinic visit 41 times in this 29-month time period. Of these, 13 calls (32%) resulted in another clinic visit, often for pain and symptom management.

In addition to the services provided by the outpatient Madison Clinic, CPCH physicians and the CNS provide paediatric palliative consultations to BCCH inpatients. Although this service previously existed on an informal basis, it was enhanced and formalized with the addition of the Madison Clinic. Table 2 shows the inpatient hospital consultations that were undertaken by the hospice team over a one-year period between April 2007 and March 2008.

TABLE 2.

The BC Children’s Hospital (Vancouver, British Columbia) inpatient consultations between April 1, 2007 and March 31, 2008. Number of patients shown in parantheses

Number of children seen	46
Total number of contacts	150
Location of child when consultations occurred, %	General wards: 68% (102)
	NICU: 13% (20)
	PICU: 9% (13)
	Outpatient clinics (other than the Madison Clinic): 6% (9)
	Emergency room: 4% (6)
Reason for consultation, %	Update on status: 46% (69)
	Symptom management: 41% (62)
	Care planning, transition planning, referral to the CPCH: 41% (61)
	Family support: 37% (55)
	End-of-life support, advanced directive planning: 25% (37)
	Other: 2% (3)

Does not include consultations to children at home or other community health care providers outside of hospital. All reasons for consultation are included, therefore totals are greater than 100%. CPCH The Canuck Place Children’s Hospice (Vancouver, British Columbia); NICU Neonatal intensive care unit; PICU Paediatric intensive care unit

Eighty-three per cent of the time, the focus of the visit was to obtain a status update or to provide psychosocial support to the children and their families. Information from the consultation was shared with other members of the health care team, including community-based health care providers, to initiate changes in the treatment approach, if required. Beyond formal consultation, informal CNS visits occurred 21 times with 18 patients during the first year. All but three of those patients were previously known to the hospice-palliative care program; another three patients had been seen in the Madison Clinic but never at the hospice.

All families who visited the clinic in the first 12 months were provided with a satisfaction survey by mail. Of the 19 families, there were six responses. All of the responding families expressed strong satisfaction with the clinic and saw value in the service it provided. They also confirmed that the clinic offered a strong continuity of services between the BCCH, the CPCH and other health care providers.

Because the clinic was initially supported by donation, cost was an important evaluation criterion, before the hospice and hospital considered ongoing operational funding. It was projected that the clinic would require $29,000 to support the first year of operation and a total of $41,000 for the full 18-month trial. The costs did not include compensation for physicians because they were already funded through the hospice. Overhead costs for clinic, space, telephones and computers were covered by the hospital. The clinic continues to operate within budget. Based on the evaluation data at 12 months of operation, the decision was made to continue supporting the clinic.

DISCUSSION

The overall impact of an outpatient clinic is emphasized in terms of continuity of care for patients and their families. Two core elements distinguish continuity of care – care over time and the individual’s experience of care (18). The clinic has also worked hard to make sure that all of the clinical teams involved in a child’s care are aware of the results of consultations, and has functioned as a central coordinating point for care and for team-family discussions. In turn, this coordination has been a good example of the clinic’s role in enhancing informational and management continuity – two elements within the construct of continuity of care (the third being relational). The Madison Clinic acts as a bridge between assessments and interventions carried out in two inpatient settings in a hospice facility and a hospital.

A significant point of interest from the outset of the project was the need for advanced symptom management in an outpatient setting. The clinic was designed to address the specific and varied symptom concerns that affect paediatric palliative patients and their families. The results clearly demonstrate the demand for these services. Although the hospital already offers a pain service, the Madison Clinic was able to comprehensively treat multiple symptoms, including but not limited to pain, thus providing a valuable supplementary service to patients in need of extensive care. The majority of clinic patients were referred for pain and symptom management.

One goal for the hospice palliative care program was to provide an earlier introduction to palliative care as another option, especially for families not yet ready to engage in the full hospice program; in some cases, families are not even willing to visit the hospice. The Madison Clinic appeared to be an effective compromise in this respect, because 44% of the children seen were not yet on the hospice program. The issue of continuity of care exists from the time of diagnosis, which is an important transition point in the life of the patient and family living with life-limiting conditions, especially those without curative treatment options. Hays et al (3) in Seattle, USA, have shown how early introduction may facilitate a change in when families may be willing to have the concept of palliation introduced. Rahi et al (19) described a unique program in which key community workers were present at the time of diagnosis to provide information, support and continuity. In a similar way, there is an opportunity to introduce palliation, defined as family support, respite and advanced symptom management, when cure is not available or when advanced curative options are being introduced. This may be an important function of the clinic in the future as knowledge of the clinic grows among subspecialty services.

Our results indicate a high level of activity for the Madison Clinic in its first two-and-a-half years, both for outpatients and BCCH inpatients. Although the numbers were small, family responses were uniformly positive. Keeping the program within a small budget has been important in having the program receive operational funding, which it now does. Leveraging the existing resources, such as hospice-funded physicians and CNS combined with the clinical-administrative infrastructure at the hospital, was a key element in implementing the program on a limited budget and obtaining leadership support.

There are several limitations to the clinic model and function in its current form. If comprehensive continuity of palliative care includes hospice, hospital, clinic and home, then the Madison Clinic, the BCCH and the CPCH directly support families in only three of four of these settings. Home may arguably be the most important setting. We address care at home by collaborating with a wide variety of service delivery organizations across the province. Work is currently underway with several regional health authorities to develop formal paediatric palliative care programs coordinated between all levels and locations.

A second limitation of the clinical model is the relatively low visibility of the program, with a formal presence in the hospital one day per week; this likely impacts the referral rates from other subspecialty clinics, especially for children not previously known to the CPCH. Nevertheless, because of frequent informal contact with the palliative CNS and physicians in the hospital, there is growing awareness of the clinic. The degree to which on-site presence of a palliative care clinic in the hospital influences paediatric residents and staff physicians is an interesting and important question. Certainly, ‘curb-side’ consultation has an impact, but one that is difficult to quantify (20). Nevertheless, the presence of the clinic may not only be an avenue for families to become more familiar with a palliative approach without visiting the hospice, but may have an impact on consultation practice.

A third limitation is the lack of clinic-based psychological services. Psychosocial intervention was a component of the initial program design, but it was not implemented during the immediate start-up phase due to resource and personnel constraints. Psychosocial support was obtained from specific individual programs or the hospice, until now. Clinic-based psychosocial intervention will be implemented in the next phase of the clinic’s development.

The evaluation would have been improved with a higher response rate to our survey questionnaire. Burden of care can be a barrier to participation in research studies and may not reflect any aspect of the program (21). Additionally, questionnaires were not distributed to families who had experienced the loss of a child during their involvement with the clinic. A second limitation is that we are not able to directly attribute improvements in symptoms to the clinic because the clinic does not operate in isolation, and symptom management also occurs at the hospital and the hospice for these children. Third, we need to design innovative ways to measure families’ experience of continuity and coordination of care and determine whether the clinic is having a direct impact on this.

CONCLUSION

The recent promulgation of standards, norms and policy papers for paediatric palliative care services in Canada, the United States and the United Kingdom suggest this care will increasingly become a standard component of child health services in advanced settings (2,4,22). The establishment of a clinic will provide focus and inclusiveness for the strong paediatric palliative care currently available. This is a timely opportunity to optimize the expertise and resources of CPCH and BCCH and to enhance the long-standing relationship between the organizations. This clinic provides an opportunity to address gaps in care currently perceived by families and clinicians, and to facilitate the further development of an exemplary multidisciplinary service in paediatric palliative care.