Factors associated with multiple transitions in care during the end of life following enrollment in a comprehensive palliative care program

During the end of life patients often experience changes or transitions in where and by whom they are cared for. These situations may result in increased anxiety for both the patient and their caregivers [1]. Such transitions may involve a change in hospital wards, a move from hospital to home or long-term care facility or a change in health care provider. With each transition there is a need for planned and integrated transfer of patient information, both medical and personal, the reiteration of patient preferences and the renegotiation of care goals. Transitions also require the patient and their caregivers to create new or redefined relationships with an expanding set of health care providers, establish new communication channels and form new trusts [2]. Physical aspects of a transition also need to be addressed and implemented in a timely and coordinated matter in order to minimize the effect on the patient and their caregiver's experience of care. These include the provision of hospital equipment in the home or advanced planning for admission/transfer to an alternative ward or institution.

At the same time we acknowledge that transitions may also be quite welcomed by patients and families. When the stress of symptoms or caregiving situations is too much at home, a move to hospital may be a relief to all. The same may be true of a transition of service provider such that patients may see the most competent professionals needed are finally involved in their care.

Nevertheless, in our modern health care systems we must ensure that care that moves patients across care settings and across clinical programs is as integrated and as smooth as possible. Although not all transitions during the end of life can be avoided, reducing the number of unnecessary changes in settings and providers may alleviate some hazards associated with transitions and provide the patient and their caregiver with a better care experience and quality of life during the end of life.

The database maintained by the Palliative Care Program (PCP) at the Queen Elizabeth II Health Sciences Center (QEII) in Halifax, Nova Scotia, Canada provides us with a relatively unique opportunity to track how often and when transitions are experienced by patients admitted to the program in addition to the provision of some basic patient demographic information. The PCP is comprised of an in-patient acute care unit, an in-hospital consultation service and offers home consultation services and an oncology outpatient clinic consultation service. Team members include health care professionals such as physicians, nurses and pharmacists in addition to social workers, spiritual care providers and volunteers. Since opening in 1988, the PCP has experienced major gains in the proportion of advanced cancer patients within the Halifax Regional Municipality (population approximately 350,000) being admitted into the program, increasing from 21% of all those who died of cancer in 1988 to 62% by 1997 [3, 4]. Once admitted to the PCP, changes or transitions in location and care provided to patients are documented on the program's electronic database [5].

By looking at the relationship between number of transitions and patient characteristics we hope to identify patient predictors of multiple transitions. Advance identification of those who could potentially experience numerous transitions will allow providers and caregivers to anticipate the problem and consider strategies to minimize their occurrence. Advance identification will also allow the patient and caregiver to prepare for these transitions, both physically and emotionally, before they occur.

In a companion paper we described the distribution of transitions in care experienced by palliative care patients during the time subsequent to admission to a comprehensive palliative care program [6]. In this paper we describe the relationship between patient characteristics and the total number of transitions experienced by the patient from the date of admission to the PCP to death and during the final two and four weeks of life.

This study represents a further investigation of transitions experienced by all patients registered in a comprehensive palliative care program (PCP) at the Queen Elizabeth II Health Services Center (QEII) in Halifax, Nova Scotia, Canada between January 1, 1998 and December 31, 2002 with a recorded date of death on or prior to December 31, 2002. Details of the initial investigation describing the distribution of transitions in care among these patients have been previously published [6].

The research ethics board of the Nova Scotia Capital District Health Authority, Halifax, Nova Scotia provided ethical approval for this research. Personal identifying information was not included on the records used for this project. All patient information available was provided anonymously to preserve confidentiality.

Between January 1, 1998 and December 31, 2002, 3972 adult patients were admitted to the QEII PCP and had died on or prior to December 31, 2002. Just over half were male (52%), 65% were 65 years of age or older (mean 68.5 years, SD 13.7), the majority lived in an urban setting (70%) and 90% had been diagnosed with cancer. The major single cancer site was the lung accounting for 29% of all cancer diagnoses. The primary reason recorded for admission to the PCP was pain (46%), followed by the need for patient or family support (23%) and need for other symptom control (22%). Overall, just over half of patients admitted to the PCP (51%) experienced a hospital death outside the inpatient PCP unit whereas 31% died in their home. However, home deaths among PCP patients who had received at least one home visit by the PCP team, was found to be much higher, at 58.5%. Survival time, the number of days between program admission and death, varied from 0 days (died same day as admitted to the PCP) to 1688 days, with a mean of 100.6 (SD 163.2) and median of 45 days. Eighty five percent of patients admitted to the PCP survived 6 months or less. A table of relevant patient characteristics may be found in a previously published article [6].

In total, 5903 transitions were experienced by PCP patients over the five year study period (mean 1.5, SD 1.8; median 1; range 0 – 21). Twenty eight percent did not experience a transition following admission to the PCP, an indication that this group of patients experienced no change in the care provided or the location of care from the point of PCP admission to death. Over 40% experienced one transition while only 6.3% of PCP patients experienced five or more transitions. During the last four and two weeks of life, 47% and 36% of patients, respectively, experienced at least one transition. The mean number of transitions among patients during the last four weeks (mean 0.6, SD 0.8; median 0; range 0–6) and last two weeks (mean 0.4, SD 0.6; median 0; range 0–4) prior to death proved less than one. Further information pertaining to the number and type of transitions experienced by PCP patients are detailed as part of an alternate article by the authors [6].

Overall, results suggest PCP patients who experienced a hospital death and those with a cancer diagnosis were more likely to undergo multiple transitions during the time period from initial PCP admission to death. Fewer transitions were associated with being female, elderly and having died more recently. In focusing on the last month of life, these associations change somewhat with age no longer being associated with the total number of transitions, some cancer diagnoses being similar to or related to fewer transitions than a non-cancer diagnosis, and pain and symptom control becoming a significant factor associated with a greater number of transitions.

During the time period from initial PCP admission to death, patients dying in the PCP inpatient unit were found to have twice as many transitions compared to those who died at home. Further, the number of transitions during the last two weeks of life was found to be four times higher among patients with a PCP inpatient death compared to a home death. Anecdotal evidence gained from clinical experience suggests patients admitted to the PCP inpatient unit have more 'complicated' needs with respect to pain, symptom control and psychosocial issues. Because of this, they tend to be readmitted to the unit following transitions elsewhere. Our data provide some evidence to support this view. During the last four and two weeks of life, pain and other symptom control as reasons for PCP referral were found to be significant factors associated with greater total transitions suggesting patients in the PCP inpatient unit and other acute care hospital wards are more in need of this form of care. However, even after adjustments are made for these pain and symptom factors, a clear association remains between having had multiple transitions and dying in the PCP inpatient unit. We suggest that once a relationship and a comfort level between patient and the PCP unit staff becomes established, the patient is more inclined to return to the PCP unit as death draws near.

Over the full time period from PCP admission to death (Table 1), patients referred to the PCP with cancer experienced significantly more transitions than the subset of referred patients without a cancer diagnosis. However, as death drew near (Table 2, last four and two weeks of life) this situation reversed and cancer patients experienced fewer transitions than non cancer patients. In the early phase of the move toward palliating cancer patients, oncological therapies and potential complications may necessitate more transitions in care. In general, cancer has a longer time course with a much slower and predictable decline allowing services to be organized more easily in the longer timeline available. Cancer patients often have clearer goals of care and end points. However, non cancer patients have more uncertainty of when they will die. Because there may be reversible mechanisms causing their decline and potential treatments available, the time when palliation is needed may be more difficult to define. A good example of this is congestive heart failure.

Women admitted to the PCP experienced fewer transitions than men during their total time in the program following adjustments for the effects of age, diagnosis, year of death and location of death. A reduced number of transitions among women is even more apparent during the last four and two weeks of life. Why would women make fewer transitions? Do women have different goals in where and how they are cared for during the end of life? Is a home death more desirable among women or does their disease progression and need for support differ from men? Closer examination of our data indicates a small, statistically insignificant difference in the number of home deaths among men and women who had been provided care at home at least once while a patient of the PCP (for women 51.4%; men 48.6%). Previous studies we conducted demonstrate that women with breast cancer are more likely to die out of hospital than women with other cancers and men in general [8]. An alternate view might also consider fewer transitions the result of women's needs during the end of life being overlooked by the health care system, in that they are not getting access to needed hospital or community services. Finally, we wonder if caregiver availability and ability to women might be different than for men? Each of these questions deserves further study in order to understand whether or not women have different needs necessitating fewer transitions or are being denied access to some elements of care.

Age was also a factor in the number of transitions a PCP patient may experience. After accounting for gender, diagnoses, year of death and location of death, fewer transitions were evident with increasing age. This association was evident only during the full time period from program admission to death and not a significant indicator during the last four or two weeks of life. Is this reflective of new developments in palliative care and chemotherapy regimens being given among younger patients, particularly when they are first admitted to the PCP? There is evidence that the elderly have less access to screening and state of the art treatment for cancer [9–11]. Or do younger patients have more aggressive disease demanding greater symptom control? Alternatively, it may be that older patients are already in hospital, home or long term care and inclined to stay in that situation.

Compared to the initial study year, 1998, the number of transitions among PCP patients in subsequent years has declined significantly. This reduction could be a reflection of more community services being available such as the expansion of home care [12] allowing people to stay at home when they might have otherwise needed hospitalization. The countering argument is that fewer hospital supports, most notably fewer acute hospital beds, are available in the more recent years of the study perhaps making transition to hospital less likely [13].

Although the number of beds available in the inpatient unit of the PCP has remained stable since 1997, the reduction in the number of transitions made by patients from 1999 onward may be a reflection of an increase in the number of Home Consult Registered Nurses (RN) associated with the program. In 1999 the number of home consult RNs rose from three to five.

The demographics of the adult patients admitted to the QEII Health Sciences Center PCP have changed slightly since program initiation in 1988 [3]. Compared to the 1988 to 1993 period, the number of males involved in the program declined by only 2% (from 54% in 1988–1993 to 52% 1998–2002), while the median number of survival days, the time from admission to the PCP to death, decreased from 54 days in 1988–1993 to 45 days in 1998–2002. This latter change reduces the number of survival days available to patients for transitions and demonstrates the need for our "survival time" adjustment. A reduction in the median number of days in the PCP may be an indication of less time available to affect planned, coordinated and integrated care in a way that might minimize transitions for patients. Alternatively, the reduction may be a reflection of changes in oncological practice for palliative regimes over the time period.

Although slightly more non cancer patients were admitted to the PCP in later years, cancer patients continue to constitute the majority of PCP admissions, in particular patients with cancer of the lung. Cancer of the lung persists as the most common site of cancer mortality in Canada with deaths in Nova Scotia being higher than the national average [14]. It is therefore reasonable to expect a greater percentage of lung cancer patients being admitted to the PCP. Our lung cancer patients represented 26% of all PCP patients, a slightly higher proportion than that reported in Ontario (20%) and United Kingdom (23%) palliative care settings [15, 16]. Even though the proportion of elderly (≥ 75 years) patients in the program has increased over time from 28% (1993–1994) to 37% in the current study years (1998–2002), PCP involvement among patients less than 65 years of age remains relatively higher given that among all cancer deaths in Nova Scotia, 46% are among those 75 years or older and only 26% less than 65 years of age [8]. Possible under representation of the elderly in a PCP program has been reported by others and in our previous work [3, 4, 16]. This continues to raise concerns for us about where the elderly access specialized palliative care. Do they obtain palliative care from other ambulatory or home based care programs of long term care or other facilities or are they not getting the services they need [17]?

Many patients experience transitions or changes in location or care at the end of life. Our data suggest there is some variation in the number of these transitions associated with the demographics and diagnoses of patients. A number of issues need further exploration such as the associations with gender and age and how caregiver supports and symptom issues contribute to these. Also important is the need to facilitate continuity of care across settings since many transitions are inevitable and often integral to care.