Patients followed by the QEII PCP are primarily elderly (75% 60 years of age or older), urban dwellers, with cancer and survive less than six months from time of initial program admission (80%). This age and sex distribution is similar to that experienced among all Nova Scotians who died due to cancer between 1992 and 1998. The average number of transitions experienced in care settings by this group of elderly was 1.5. Two or more transitions were experienced by 31% of patients. We were surprised that the vast majority of patients (69%) had fewer than two transitions. We had expected the number to be somewhat higher. Our clinical experience of providing care for these patients is perhaps skewed by the challenges faced by the minority of patients with multiple transitions.
Patients who had no transitions beyond entry to the PCP appear to be a different population than those with one or more transitions. This group may be a much sicker population since they tended to have much shorter survival times, were older and more likely to die in hospital. They were also more likely to die of disease other than cancer. This population warrants special attention in program planning and service delivery given their potentially higher institutional based needs.
The most common transition identified was from an acute care hospital unit "to" the home. This fact, in and of itself, provides evidence for the substantial focus that must take place in hospital on discharge planning for those at the end of life. Attention to the multiple discharge issues for this unique group of patients is likely the single biggest transition issue facing the acute care units and the consulting QEII PCP. Issues of symptom control, drug supplies, home equipment needs, family and professional caregiving needs in the home, advance planning for routine follow up and crisis management as well as the psychological supportive issues all need planning. The acute care teams must do this planning along with the QEII PCP consult team in collaborative fashion. These transitions present challenges in coordination and information transfer in order to facilitate continuity of care for patients and families.
The next most common category of transitions was from home "to" the hospital, either to an acute care unit or to the PCP inpatient unit. Just as the previous transition needs to be planned and coordinated so does the home to hospital one. Unfortunately we have no data on how this latter transition occurs. Most often it may be due to a symptom crisis in the home, a lack of caregiver capacity in the home, or a lack of financial resources to bring adequate care to the home. Given the substantial pressure on acute hospital beds in Canada today, many of these admissions take place via the emergency department. Such environments may be appropriate in acute symptom stabilization before admission but the emergency department could be bypassed with planned and coordinated direct admission to the inpatient unit concerned. More information is needed on the "route" taken to hospital and the issues that require admission, the goals of admission and whether or not hospital based care versus respite / long-term care would best meet patient care needs.
Most patients came to the care of the PCP from within the acute care system. This may be a reflection of the lateness of referral for a substantial number of individuals (40% dying within 15 days of referral). These individuals, by the time of referral, may be quite ill in hospital. This initial entry to PCP (also a transition of care but one we did not explore) may need to be a focus of concern to better understand it. We need to understand the timing of referrals, what can be done to identify and meet patients' needs when required and whether these needs could be met outside of the hospital setting.
Once under the care of PCP the most common transitions were "to" home. Only a very small number of patient move "to" or "from" long term care (LTC). The fact that the majority of transitions were to home reflects the goals and expertise of the PCP in emphasizing the home location by coordinating the services needed for care at home. The fact that long term care is a rare transition also needs exploration. Policies may exist or wait times for admission may be such that transition to these facilities for people with short prognosis is difficult to achieve. At the same time, few patients transition "from" long term care. Some local LTC facilities have intramural palliative care programs designed to specifically meet the needs of their residents and their goals of staying in LTC as death approaches, avoiding hospital transfers.
The results of this study indicate almost half of patients have a transition in the last month of life and 36% in the last 2 weeks of life. As death approaches these transitions are more likely to be "to" hospital (i.e. 62% of those in the last 4 weeks and 68% of those in the last 2 weeks). Defining the "appropriateness" of these late transitions is difficult. As stated before, they may be due to acute symptom crises or caregiver inability to meet all of the care needs. We have also heard that patients are admitted when they appear in emergency departments with these issues as they have not been able to access professionals to assess and problem solve during nights and weekends. Therefore, some late admissions are entirely appropriate and others may have been avoidable if more resources were available to patients and families at home.
As to the generally longer stays for patients when not under "active PCP" care, it may be that they are much less sick with other chronic, non-palliative problems and their prognosis is longer. One might also postulate that for the in-patients, the active involvement of PCP may facilitate shorter stays and transitions to the home. Such facilitation could include more rapid control of symptoms or more expeditions discharge planning. The phenomena may be similar in both the home and long-term care settings.
One substantial limitation is the loss of information pertaining to patients who are transitioned to non-active care permanently. Although we do have a record of their death, once a patient is moved to non-active care and ceases further involvement with the PCP, we do not have a record of who has taken responsibility for their care or where this care has been received. Our results and our clinical experience suggest this group may be quite different from those who remain actively cared for by the PCP. We have begun efforts to collect information about this group in order to understand them better.