Availability of Services in Ontario Hospices and Hospitals Providing Inpatient Palliative Care

Introduction

Although an increasing number of Canadians are dying at home, more than 60% of deaths occur in inpatient settings. ¹ Reasons for this continued high prevalence of hospital deaths may include insufficient health care resources for home care, lack of availability of family members to provide care, or the need for specialized nursing or procedures that cannot be provided in the home.^1,2 Patients with advanced illness and their families are encouraged to plan for the end of life by completing advance directives and discussing their end-of-life preferences, including their preferred place of death, with health care providers and family members. ³ Previous publications have described the prevalence and structure of palliative care programs in U.S. cancer centers ⁴ and general hospitals,^5,6 and academic palliative care programs have published information regarding their palliative care units (PCUs).^7-11 As well, individual units often provide pamphlets and information about the general nature of the care provided. However, there has been no systematic investigation of the specific medical services and treatments offered in various inpatient settings and the differences that may exist among them.

Inpatient palliative care in Canada is provided in residential hospices or in hospitals, where care is provided either on specialized PCUs or on general or subspecialty (usually oncology) medical wards (MWs). Unlike the United States, Canada does not have a separate hospice system that necessitates a choice between hospice and life-sustaining treatments; ¹² however, almost all Canadian residential hospices provide exclusively end-of-life care, in a home-like residential setting. The Ontario Ministry of Health End-Of-Life Care Strategy increased funding for residential hospices in 2005, ¹³ but a large proportion of the budget for hospices still comes from private funds, and they rely heavily on volunteers. In contrast, PCUs are located in ministry-funded hospitals, although access to acute medical services within the hospital may be restricted according to unit or hospital policies. MWs that provide palliative care may or may not have a small number of beds designated for this purpose and may or may not have access to a consultant palliative care team.

In order to make improvements to the delivery and accessibility of palliative care, it is necessary to identify what services units are currently able to provide and what barriers may limit their availability. The primary goal of this study was to determine the availability of medical services and procedures and of complementary recreational and spiritual programs in institutions offering inpatient palliative care in Ontario, Canada. Secondary goals were to compare services, programs, and procedures provided in residential hospices, PCUs, and MWs, and to identify barriers to their provision.

Methods

Survey sample

Figure 1 shows a flow diagram of how facilities were identified and of the survey completion rates. Facilities providing hospice or palliative care in Ontario, Canada, were identified using the Ontario Hospital Association (OHA) ¹⁴ and the Hospice Association of Ontario (HAO) ¹⁵ websites. Health care facilities are listed on the OHA website by region; telephone contact information for each health care facility was obtained by searching each region on the website. Two hundred and sixty-one inpatient health care facilities were identified using this method; 233 remained after excluding mental health (n=16) and rehabilitation facilities (n=11) and a diabetes clinic (n=1). Using the HAO directory, 19 residential hospices were identified. Two further hospices known to the investigators but not listed in the directory were also included.

OPEN IN VIEWER

FIG. 1.

Flow diagram of recruitment process.

With contact information from the websites, each of the 254 facilities was telephoned by one of the investigators (ED) and asked if their facility provided inpatient hospice/palliative care. If so, then the investigator requested the telephone number of the person in charge of hospice/palliative care for the facility, who in turn was called, informed of the purpose and nature of the study, and asked to provide verbal consent to receive a survey. If it was discovered that incorrect contact information had been provided, the investigator requested the correct telephone number, so that this person could be reached. Consenting participants provided their e-mail address so that the survey could be sent and completed electronically. At least two attempts were made to contact each palliative care representative by telephone. A total of 128 facilities provided inpatient hospice/palliative care (21 HAO facilities and 107 OHA facilities) and provided verbal consent to receive the survey; 14 OHA palliative care contacts could not be reached directly and did not answer voicemail messages.

Participants provided the name of their facility, so that they could also participate in a future online directory providing information on services accessible to patients and care providers. All participants were informed that published results of the survey would be anonymous. Surveys were sent to the 128 participating facilities. A reminder telephone call was placed at two weeks and electronic reminders were sent at one and five months. Data collection was performed between October 2008 and March 2009.

Results

Discussion

In this survey of inpatient palliative care in Canada's most populous province we found considerable variability of available services. Palliative care was provided on MWs in the majority of facilities and in almost 90% of those in rural areas. These wards were least likely to require a DNR order, and most likely to offer access to more aggressive medical therapies, such as intravenous chemotherapy and intravenous antibiotics. More than 30% of MWs did not offer care for chest tubes, nephrostomy tubes, or tracheostomies, more than 30% did not provide thoracentesis or paracentesis, and 28% did not provide care for intrathecal pain pumps. Only half had access to a palliative care consultation service, and fewer than half had access to a palliative care physician or to individual psychosocial counseling.

Given that most Canadians die on MWs in hospitals, ¹ and that general medical staff tend to have inadequate training in palliative care,^17,18 efforts should be made to recruit specialized palliative care staff who can provide advice to primary care clinicians and to increase training of other clinical staff in palliative care. This training should include not only pain and symptom management, but also care for basic medical devices such as tracheostomies and chest tubes, and training in counseling and psychosocial care. The latter is particularly compelling given the results of a recent survey of Canadian patients and caregivers, which defined improved psychological and spiritual support, and better communication and decision making, as priorities for improving end-of-life care. ¹⁹

Although palliative care services and personnel were most likely to be available in PCUs, not one type of service or specialized staff was universally provided. In particular, basic palliative measures, such as oxygen, intravenous hydration, suctioning, thoracentesis and paracentesis, were not always available. It is noteworthy that some of these services can be provided at home. Oxygen can be provided in the home setting, and provides palliative benefit for dyspnea for patients with hypoxemia.^20,21 Intravenous hydration can also be provided at home and may prevent or alleviate delirium, sedation, and myoclonus.^22,23 Paracentesis and thoracentesis, which were offered at a minority of hospices and only approximately a third of MWs and PCUs, are procedures that have been proven to palliate associated symptoms and improve quality of life.^24,25 Although some facilities may lack proper imaging resources to prevent or rule out complications, these bedside procedures may offer substantial palliation; an effort should be made to ensure that they are more readily available.

Methadone for pain management was not available in 15% of PCUs, 33% of hospices, and 62% of MWs. This unique opioid agonist is useful for cancer patients with refractory pain or dose-limiting toxicity with other opioids. ²⁶ Because methadone is a controlled substance, Canadian physicians who wish to prescribe it need to apply for an exemption, or “methadone license” under section 56 of the Controlled Drugs and Substances Act. ²⁷ However, those who apply are generally specialists in pain control or palliative care, with most general physicians lacking both a license and experience in prescribing and titrating methadone. As a result, patients who have been successfully rotated to methadone for intractable pain in a tertiary PCU may then have no physician able to provide ongoing supervision and prescription when transfer is attempted to another facility, particularly in rural areas where palliative care is provided mainly on MWs. Given the increased availability and use of methadone for pain control, all physicians providing palliative care should be familiar with this medication and have a license to use it.

A minority of facilities had palliative care outpatient clinics. Although this is not surprising for residential hospices, these clinics were also not available at more than 80% of hospitals offering palliative care in PCUs or MWs. A recent survey of cancer programs in the United States similarly found that less than half had palliative care outpatient services. ⁴ In a randomized trial of patients with lung cancer, early integration of palliative care improved quality of life, and was associated with less aggressive end-of-life care and longer median survival compared to standard oncology care alone. ²⁸ Palliative care clinics are necessary for early integration and can improve both symptom control and patient satisfaction in cancer and noncancer populations.^28-30 The survey responses regarding community outreach teams are more difficult to interpret, as these teams tend to operate on a community-wide basis, each encompassing catchment areas from several hospitals. ³¹ Thus although a particular facility may not itself offer home palliative care, this service may still be available at that facility, either through an external specialized hospice/palliative care program or by the patient's family physician.

A minority of respondents from all three types of facilities felt that geographic barriers limited the provision of high quality palliative care at their facility. However, they were responding from their perspective as care providers, rather than from a larger health services perspective, and difficulties of access to hospices and PCUs for patients in rural settings have been described in other studies. ³² A majority of respondents identified lack of human resources and financial support as moderate to severe barriers. Financial support was a particular concern for hospices, which is not surprising, in that hospices in Ontario are only partially funded by the Ministry of Health and rely heavily on less stable private funding. Nevertheless, financial concerns were also prevalent for a majority of PCUs and MWs. A majority of residential hospice respondents indicated that late referrals were a moderate to severe barrier compared to a minority of those from PCUs or MWs. However, the services provided by residential hospices may allow them to provide care only at the very end of life, with less availability of treatments for palliation earlier in the disease course, such as paracentesis, thoracentesis, intravenous hydration, intravenous antibiotics, or transfusions.

This study has several limitations. The sample was obtained from two websites that have the most comprehensive listings of facilities in the province, and there was representation from every Ontario Local Health Integration Network region. However, these listings may not be complete and there were likely hospices or hospitals providing palliative care that were not included. As well, despite an attempt to be inclusive, there were likely services/procedures that were omitted; subcutaneous hydration is one omitted procedure that would have been useful to include. The non-anonymous nature of the survey could have prevented participants from providing truthful answers regarding barriers to care, although answers regarding services provided might be more accurate due to transparency of the source. We did not specify whether availability of staff from various disciplines was in person or by telephone consultation, though the former was intended, nor did we ask more specifically about availability in terms of hours per day or days per week. There may also be response bias, depending on the role of the person who completed the survey. Lastly, we did not include nursing homes in our survey, which are the site of death for approximately 30% of Canadians. ¹ The limited research about end-of-life care provided in long-term care settings suggests that there are unmet symptom needs, ³³ which may be due to inadequate staffing and lack of resources.^34,35 Further research in this area is needed.

In summary, we have found a broad range and variability of available palliative care services throughout the province. Regional inpatient palliative care directories providing information about available medical services would help patients and care providers to choose an inpatient palliative care setting that meets individual needs. However, such choices are not always possible, particularly in rural areas, where palliative care is offered mostly on MWs. Further efforts are required to ensure that all inpatient palliative care facilities have sufficient resources to supply basic palliative measures to patients and to offer care for common interventional procedures. Dissemination of information about available resources may be useful not only to inform referral decisions, but also for advocacy to enhance the acquisition of resources and standards of palliative care.