Introduction

Although advances in cancer treatment have been substantial, approximately 50% of patients diagnosed with cancer will eventually die of their disease [16, 17]. More than 80% of cancer patients experience pain before death [2], and patients may have many symptoms related to both the disease and its treatment [1, 7, 13, 15], which may be present from the time of cancer diagnosis [20] and increase in prevalence and severity as death approaches [5, 14]. It is increasingly recognized that complete care of the patient with cancer also includes palliative care and that such care is applicable early in the course of illness, in conjunction with life-prolonging treatment [17, 21, 23]. While there are published reports on palliative care programs in the US and Canada [3, 9, 22], including programs in prominent American cancer centers [3], there has not yet been a published report of a palliative care program within a Canadian cancer center.

Princess Margaret Hospital (PMH) is Canada’s largest center for cancer care and research, and it is an international referral center for patients with cancer. The Palliative Care Program at PMH has developed in the last decade from a consultation service into a comprehensive clinical, educational, and research program, with an acute palliative care unit, daily palliative care clinics, a cancer pain clinic, and a consultation service that sees urgent consultations on a same-day basis in inpatient and outpatient areas. The mission of the PMH Palliative Care Program is to provide excellent and timely symptom management, psychosocial support, and spiritual care for patients with advanced cancer and their families, throughout the illness and during bereavement, in an academic environment that fosters research and education. We will describe the components, successes, and challenges of our program, which may be useful for others, who are developing palliative care programs in similar settings.

Palliative care in Canada

Palliative care in Canada began with the opening in 1974 of palliative care units in two tertiary care hospitals: St. Boniface General Hospital in Winnipeg and Royal Victoria Hospital in Montreal. Traditionally, palliative care units in Canadian hospitals were designated for terminal care, with patients living in such units for the last weeks to months of their lives. More recently, “acute” palliative care units [19] were established in tertiary care settings. The focus of such units tends to be on the management of complex physical and psychosocial symptoms, with a large proportion of patients being discharged home with appropriate support and others being transferred to longer-term units or hospices for terminal care. Although approximately 70% of deaths in Canada still occur in hospitals [12], most of these patients die on acute care wards rather than on palliative care units. Inpatient palliative care consultation teams offer advice to attending teams about symptom management and psychosocial care at the end of life and assist with discharge planning for terminally ill patients.

Unlike in the US where patients requiring palliative care were conventionally referred to home-based hospice programs [3], there is no separate “hospice” program for terminally ill patients in Canada. Hospices in Canada are small, freestanding inpatient centers (typically eight to ten beds), which are staffed to a large extent by volunteers, who may also visit patients at home. The home care program in Ontario, which is universally funded by the provincial Ministry of Health and Long-Term Care, is organized through Community Care Access Centers (CCAC’s) providing services such as nursing, personal support (e.g., help with dressing and bathing), social work, and physiotherapy. The maximum number of hours of care provided per week is based on prognosis; patients with a prognosis of less than 3 months are entitled up to 40 h of personal support per week. Physician palliative care at home may best be given by the patient’s family physician; however, family practices are predominantly office-based and only a small minority of physicians provide home visits. As a result, groups of physicians dedicated to palliative care have formed to provide home palliative care, including a 24-h on call service, to communities in Ontario. Unfortunately, not all areas of Ontario are covered by such a service for a number of reasons, not the least of which is that this work has historically been poorly remunerated. However, the provision of salary funding for physicians engaged in home palliative care is currently being negotiated with the Ontario Ministry of Health, and Cancer Care Ontario (the provincial cancer control agency for Ontario) has recently made palliative care a priority for its cancer program. These changes will hopefully lead to more comprehensive and collaborative home palliative care coverage across the province.

Princess Margaret Hospital

Located in Toronto, Canada, PMH opened in 1958 and has achieved an international reputation as one of the top comprehensive cancer treatment and research centers in the world. Over 10,000 patients are assessed annually at PMH, and 1,000 patients attend clinics there every day for outpatient treatment or follow-up. In addition to providing comprehensive cancer care, PMH also has Canada’s largest cancer research program and is an international training facility for physicians, nurses, social workers, and other professions in oncology. PMH is a teaching hospital of the University of Toronto and is a member of the University Health Network (UHN), which also includes two affiliated academic hospitals, Toronto Western Hospital (TWH) and Toronto General Hospital (TGH). While PMH is mainly an outpatient center, it also has 115 inpatient beds; it does not have an Emergency Department, and cancer patients with acute emergencies are either assessed in their community hospital or at TGH or TWH.

The department of psychosocial oncology and palliative care

Princess Margaret Hospital is divided into four clinical programs: the Departments of Medical Oncology, Surgical Oncology, and Radiation Oncology, and the Department of Psychosocial Oncology and Palliative Care (POPC). The latter department was established in 2001, with the integration of palliative care, psychiatry, psychology, and social work under one administration. At that time, there were only two full-time equivalent (FTE) palliative care physicians and two FTE advanced practice nurses providing palliative care consultations across all three UHN hospitals. Since then, the palliative care program has hired four physicians and three nurses and expanded to include an acute palliative care unit, daily palliative care clinics, and the cancer pain clinic. Plans are currently underway to develop an extensive volunteer program.

The University Health Network palliative care services

The palliative care services at UHN are centered at PMH, but span all three clinical sites (TGH, TWH, and PMH). The PMH Palliative Care Service consists of the 12-bed Harold and Shirley Lederman Palliative Care Center, an oncology palliative care clinic, and a consultant team that sees inpatient consultations and urgent outpatient consultations on a same-day basis. At TGH and TWH, consultations are provided in inpatient wards and in the Emergency Department. Although TGH and TWH are general hospitals, over 90% of consultations at these hospitals are for cancer patients, most of whom are patients already followed at PMH. Consultation requests are increasing yearly (Fig. 1), and the UHN services together currently provide palliative care consultations and follow-up to over 1,500 new cancer patients a year. In addition to the nursing staff for the palliative care unit, the existing palliative care team consists of five full-time palliative care physicians, two part-time palliative care physicians each working 0.5 FTE, two psychiatrists, five advanced practice nurses (4.5 FTE), two registered nurse case managers (1.4 FTE), a social worker (0.5 FTE), a pharmacist (0.5 FTE), a physiotherapist (0.5 FTE), an occupational therapist (0.5 FTE), and a chaplain (0.5 FTE).

Fig. 1
figure 1

New referrals to UHN Palliative Care Service

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Harold and Shirley Lederman palliative care center

The Harold and Shirley Lederman Palliative Care Center officially opened in June 2003, after a year in a temporary location while the facility was custom-designed and renovated. The 12-bed Lederman Center consists of one semiprivate room and ten private rooms, each equipped with pull-out couches so that family members may stay the night. There is also a conference room for team meetings, a quiet room, a nursing staff room, and a family room complete with lounge, computer workstation, dining area, and kitchenette. Figure 2 shows the nursing station of the Lederman Center.

Fig. 2
figure 2

Lederman Center nursing station

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The Lederman Center is based on a model of acute palliative care in the academic environment of a tertiary care center [8, 10]. Patients are admitted for acute symptom management, respite care (maximum 2 weeks), or terminal care (prognosis less than 2 weeks). The purpose of the center is the management of urgent palliative care problems, which include pain and other symptoms, psychosocial distress of patients, and caregiver exhaustion on the part of family members. The mean length of stay is 11 days, and there are approximately 30 admissions per month, 48% of whom die on the unit. Priority admission goes to outpatients, for whom the wait until admission is 0–3 days. Patients are discharged home whenever possible (37% of a total of 394 admissions for 2005), and others (13% in 2005) are discharged to community palliative care units, which have a longer length of stay (Fig. 3).

Fig. 3
figure 3

Destination at discharge (for 394 admissions in 2005)

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It has been suggested that mortality for an acute palliative care unit should not exceed 50% [3], and we have achieved this in our unit. Patients who are able to return home do so only after arrangement of a complete care plan, including provision of home palliative care or follow-up in the palliative care clinic (see below). Before discharge, all patients have an assessment by the Home Care team (which arranges home care by the CCAC for the patient’s area), and most have a family meeting organized and led by the palliative care social worker. Those who have difficulty with self-care or ambulation also have a discharge assessment by the physiotherapist and occupational therapist to determine safety at home and needs for additional help or equipment. The short length of stay and 50% inpatient mortality rate for our unit have been achieved by a combination of consistent admission criteria, early discharge planning, and the availability of home palliative care services and community palliative care units for discharge. However, terminal care remains an important focus of care at the Lederman Center, both clinically and in terms of research and education.

Unlike some palliative care units in the US [10], admission criteria for the Lederman Center include acceptance of a “do-not-resuscitate” order. However, patients may receive intravenous hydration, antibiotics, radiation therapy, red cell and platelet transfusions, and oral chemotherapy as appropriate; we are currently the only palliative care unit in Toronto that is able to provide intrathecal and epidural anesthesia. The palliative care team must have previously assessed all patients to be admitted, and only members of the team may place patients on the admission list. The admissions coordinator, who also coordinates admissions for the other oncology wards, keeps a waiting list for admissions to the Lederman Center. Priority for admission is based on acuity of need, which is determined by the advanced practice nurse for the Lederman Center in discussion with team members.

PMH oncology palliative care clinics

Most of contemporary oncology care is carried out on an outpatient basis. In keeping with this, the PMH oncology palliative care clinics provide a venue for early involvement of multidisciplinary palliative care specialists so that symptoms and psychosocial support are addressed in a timely fashion. The number of palliative care clinics at PMH has rapidly increased from a half-day clinic per week in 2002 to the current five full days per week. Referrals to the clinic constitute the largest area of growth for the palliative care service, with referrals more than doubling in the past year.

Outpatient consultations from medical, surgical, or radiation oncologists are seen within 2 weeks of referral or within a week if the request is marked urgent. If the oncologist requests that the patient be seen on a same-day basis, the referral is directed to the Urgent Consultation Service (see below). Each clinic is staffed by a palliative care physician and Registered Nurse (RN) Case Manager, who conduct together a thorough palliative care assessment and involve other specialists as necessary. The initial consultation typically takes approximately 1.5 h. This is a different model from some other centers, where an initial consultation involves a multidisciplinary team of professionals and takes 4–5 h [6, 18].

In the clinic, the RN Case Manager initially assesses the patient briefly, makes a list of the patient’s current medications, and gives the patient the Edmonton Symptom Assessment Scale (ESAS) to fill out [4]. The ESAS is a widely used clinical screening measure for symptoms and distress in palliative care patients, which is filled out at every clinic visit. The palliative care physician then assesses the patient, together with the RN Case Manager. A complete chart review, medical and psychosocial history, and physical exam are conducted, after which recommendations for palliative treatment, education, and counseling are discussed with the patient and family. Referrals are made as necessary, most often to social work, but also to palliative psychiatrists, psychologists, dieticians, wound care specialists, physiotherapists and occupational therapists, and other specialists as required. Applications to local community palliative care units for “back-up” are discussed in a timely fashion, to plan for the eventuality that care may no longer be possible at home. Referrals are often made to the Palliative Care Radiation Oncology Program [11] for treatment of bone pain, impending cord compression, or symptomatic brain metastases. Outreach referrals to home care and community palliative care agencies are made as appropriate (see below). A complete note is dictated for the patient’s electronic medical record and is also sent to the patient’s oncologist and family physician.

Follow-up is carried out in the palliative care clinic and also by telephone, especially if there are pressing symptoms that need to be dealt with on a day-to-day basis. To minimize visits to the hospital, follow-up is timed to coincide as much as possible with days when patients are already coming to PMH for chemotherapy, radiation, transfusions, radiological tests, or visits with other physicians. All clinic patients have access to a 24-h on-call service staffed by palliative care physicians so that urgent symptom issues can be readily addressed.

Outreach referrals to home care and community palliative care programs

Most patients referred to the palliative care clinic require some form of home assistance; this may involve wound care, help with dressing and bathing, supervision of medications, and symptom assessment. This is arranged by writing an official consultation to the CCAC serving the patient’s geographical area. The PMH palliative care team provides advice and supervision of care over the telephone in between clinic visits and is in regular contact with the home care nurses of the CCAC.

When the patient is too ill to continue to come to the clinic or desires home-based care, referral is made to a number of home palliative care services. These all provide a palliative care physician, who does home visits, and access to a 24-h on call service. Waiting lists for home palliative care services are generally 2 weeks but may be up to 6 weeks or longer. The PMH palliative care team continues to follow the patient until he or she has been seen by the home palliative care service. Once the patient has been seen at home, there is official sign-over to the home palliative care physician, who may at some point refer the patient back to the PMH palliative care service for admission to the Lederman Center, either for urgent symptom control or for terminal care. For patients living in areas without access to a home palliative care physician, the PMH palliative care service continues to follow the patient in person or by telephone until the time of admission to an inpatient facility.

Cancer pain clinic

A cancer pain clinic staffed by an oncologist, a palliative care physician, and an advanced practice nurse takes place one half day per week. Along with follow-up patients, three new consultations are seen each week with a time from consultation request to clinic appointment that is generally 2 weeks. The patients seen in the pain clinic are different from those who are seen in the palliative care clinics in that their prognosis is usually measured in terms of many months or years. More than 50% of pain clinic patients have pain that is due to cancer treatment or due to post-herpetic neuralgia. A majority of patients have pain that is largely or exclusively of neuropathic origin. A minority of patients are referred because of concerns about substance abuse or uncertainty as to the origin of the pain.

After an initial evaluation to determine the source of the pain and the treatment options (including referral for intraspinal therapy and re-referral for possible chemotherapy or radiation therapy), the vast majority of medication adjustment is done via telephone contact with the advanced practice nurse. The initial return appointment is scheduled for 1 to 2 months later to minimize loss to follow-up, and then subsequent visits on a quarterly basis are also scheduled if the pain is under control. The advanced practice nurse will book an earlier appointment if the characteristics of the pain change or if the original treatment plan has not led to satisfactory results.

Urgent consultation service

Consultations for inpatients are seen on a same-day basis by a team consisting of an advanced practice nurse and a palliative care physician. The advanced practice nurse continues to follow the patient during their hospital stay, with advice from the physician as required. There are also daily requests to assess outpatients on an urgent same-day basis. Most of these referrals are for urgent symptom management, while others are for psychosocial distress; in some cases, patients live far away and will not be returning to PMH for follow-up. These urgent outpatient consultations are either conducted at the referring clinic or in the palliative care clinic, depending on space availability and patient convenience. For follow-up, the patient is scheduled into the clinic of the palliative care physician who conducted the consultation.

Academic activities and initiatives

The PMH Palliative Care Program is a training ground for physicians, nurses, social workers, and other professionals who wish to gain expertise in palliative care. Every year, residents from Family Medicine, Internal Medicine, Psychiatry, Radiation Oncology, Medical Oncology, and Surgery undertake Palliative Medicine rotations of 1 month or more at PMH. Trainees receive a diverse experience admitting and following patients in the Lederman Center, as well as seeing patients in the palliative care clinics and with the urgent referral service. They are also able to participate in a number of formal educational rounds, including weekly Research Seminars, Bioethics Rounds, and Palliative Psychiatry Rounds, and monthly POPC Grand Rounds and Pain and Symptom Management Rounds.

PMH and the UHN are training sites for the University of Toronto Palliative Care Fellowship, which is dually accredited by the Royal College of Physicians and Surgeons of Canada and the College of Family Physicians of Canada. This program provides advanced training at a post-certification level for those physicians who wish to develop careers in Palliative Medicine. Physicians are educated to provide consultant level expertise to support other physicians and their patients, in the setting of a multidisciplinary team.

The Department of Psychosocial Oncology and Palliative Care at Princess Margaret Hospital also provides funded fellowships in Palliative Care. The aim of these fellowships is to provide physicians from various disciplines with the opportunity to learn comprehensively about the symptom management and psychosocial care of patients with advanced cancer, as well as to engage in ongoing research activities. The fellowship can either be focussed on education or on research. Research fellows have the opportunity of mentorship by the palliative and supportive care research group, which currently has more than a dozen ongoing projects in palliative care, funded by national granting agencies such as the National Cancer Institute of Canada and the Canadian Institutes for Health Research. In support of ongoing research in palliative care at PMH, the Ontario Cancer Institute (PMH Research Institute) has formed a Division of Psychosocial Oncology and Palliative Care, within which POPC investigators are eligible for appointment.

Graduate students in the department may now also receive research training leading to a Master’s or Doctoral degree in Palliative and Supportive Care. This collaborative degree program was initiated at PMH and is housed in the School of Graduate Studies at the University of Toronto. It provides the opportunity for students from a wide range of departments and backgrounds to obtain specialization in palliative care. Participating departments at the University of Toronto include the Institute of Medical Science, Nursing, Social Work, Sociology, Anthropology, Public Health Sciences, Pharmacy, and Counseling Psychology.

Conclusion and future endeavors

The palliative care program at PMH has developed in a short period of time from a consultation team into a comprehensive service including inpatient and outpatient pain and palliative care consultations, an inpatient unit for complex palliative care problems, and a burgeoning academic program. The program has been fortunate to have excellent administrative and donor support, without which its development would not have been possible. Our current endeavors are to expand the academic palliative care programs at TWH and TGH and to further develop the program at PMH. We are strengthening our ties with community palliative care programs; we are also developing collaborative research with medical and radiation oncology, as well as with palliative care programs at other centers.