Terminal Discharge From Hospital Back Home to Die: Experience and Perspectives From a Home Hospice

Terminal discharge is an emergent procedure for dying patients in hospital to return home. While reports on hospital staff experience exist, perspectives from community partners are lacking. We prole a cross section of decedent patients, and report clinician experience from a community hospice service. A mixed-methods approach. Electronic medical records were analysed for characteristics, trajectories and service utilisation, comparing terminally discharged and regular care patients over one year. Hospice care coordinators participated in an open-ended questionnaire and responses were analysed qualitatively. Settings/participants: The study was conducted in the largest home-based hospice service in Singapore. 260 referrals were received for terminal discharge in 2020, out of 3700 patients served. All ve discharge coordinators responded to the questionnaire. The ratio of to non-cancer in the group also three times touchpoints calls and home visits). Thematic analyses of survey responses revealed varying understanding of terminal discharge with concomitant implications; patchy handover between services that compromised care quality; and areas for improvement are suggested.


Introduction
Trajectories of patients with life-limiting conditions are unpredictable. The illness may become refractory to treatments, or adverse effects from interventions may overwhelm the vulnerable patient. Either way, complications whether from disease progression or medical treatments can cause sudden and irreversible deterioration of the patient to the extent that survival is threatened. 1,2 When that happens, the patient or family are confronted with the bad news that death is anticipated and imminent, and their hopes and wishes revisited. If requested, rapid discharge from hospital to home is an option that some healthcare providers render at this time. 3,4 End-of-life care at home alongside family caregivers allows these patients or their families to ful l aspirations for a home death. 5 Dying at home carries religious and cultural signi cance; and meeting these preferences is associated with greater family satisfaction. [5][6][7] In 2013, the Lien Foundation commissioned a survey of 1,000 people to examine death attitudes and preferences in Singapore. Of those polled, 77% reported that when given a choice, they preferred dying at home; 76% would still want a home death even without support from family, friends or medical professionals. 8 This preference to die at home is similar to that elsewhere. 5,6 With involvement of multiple providers, care transitions between settings are in reality complex interventions, especially to facilitate dying at home in a critically ill hospitalised patient where time is of the essence. 3,[9][10][11][12] This process is variably referred to as rapid, fast-tracked or terminal discharges in the literature. 4,13,14 While the underlying premise is compelling, in our experience terminal discharge can go wrong if not expertly handled, compromising patient safety or leaving regrets among informal and professional caregivers alike. Staff in hospital often perceive terminal discharge stressful to execute.
Owing to its sporadic nature, nurses nd it di cult to maintain newly acquired knowledge and skills. 15 A local study reported commonly faced issues like pressure of time, problems arranging discharge and inadequate family preparation. 3 Unfamiliarity with work ows and disrupted ward routines were speci cally cited. Quality of caregiver training was also perceived to be compromised due to carer emotional lability or general rush for time. 16 In Singapore, these discharges are routinely supported by community hospice services as partners. With continuity of care within this collaboration paramount, the perspectives from community providers however have not been widely solicited nor documented. 12,17 These insights if obtained can inform effective resource planning and utilisation among community providers in similar settings. Most of all, when combined with perspectives from institutional providers reported previously, terminal discharge as a systemic healthcare intervention may be optimised for overall quality, safety and impact. 18 Objectives We pro led a group of dying patients discharged home from hospital, supported by a large specialist palliative home care service in Singapore, with a view to uncover underlying trends and resource use.
Additionally, we explore the experiences and perspectives of care coordinators in that service while facilitating terminal discharge with partners.

Context and setting
This study was conducted in HCA Hospice Care, Singapore (HCA). It is the largest local home hospice, serving up to two-thirds of the country's patients with life limiting illness and less than one year prognosis. 19,20 Multi-disciplinary teams of doctors, nurses, medical social workers, and allied health professionals provide specialised palliative care at no charge to the patient and their family. The service includes home visits, a 24/7 helpline, equipment loans, caregiver training, as well as bereavement support.
Patient referrals come from hospitals, specialist outpatient clinics or primary care like general practitioners. In the context of terminal discharge, patients discharged home are either (i) prior hospice patients recently admitted to acute hospitals for treatment of reversible medical complications, or (ii) more commonly, newly referred patients not seen previously. Some clinicians may not speci cally label a new referral as terminal discharge but would state in the referral form an anticipated prognosis of less than seven days. For the purpose of this study, these hospital discharges were also classi ed as terminal discharge.
Within HCA, an established work ow is in place to manage all terminal discharges, whether for existing or new patients. A senior clinician routinely communicates on the phone with the referring source to make clari cations and obtain further information. Initial care plans are then made. The team-in-charge is assigned according to the patient's residence or alternative destination for terminal discharge. A triage nurse registers new cases into the electronic medical records and informs the assigned teams to standby.
To ensure active issues are timely managed, hospice staff assigned will often adjust their schedules for the day to accommodate that patient. This however can be challenging when staff are already out in the eld, particularly if equipment like syringe pumps or emergency drugs needed to be prepared ahead.

Study design
A parallel mixed-method design was employed. 21 The quantitative arm analysed retrospective data to describe the characteristics, trajectories and service utilisation patterns of patients who were emergently referred from acute hospitals to the home hospice for terminal care. All terminal discharge seen by HCA in the year 2020 were included. Electronic medical records were accessed to obtain data for pre-registered patients that had terminal discharge from hospital, or patients newly referred for terminal care at home (explicitly labelled as terminal discharge during handover or given an estimated prognoses of 0-6 days). Patients were tracked till death or discharge (if they survive their terminal diagnoses) up to one week beyond 31 December 2020 for the purpose of computing length of service or survival. To evaluate service utilisation, frequencies of home visits and phone calls were collated.
The qualitative arm drew data from surveys of hospice staff who acted as liaison between referring hospital clinicians and individual teams in the hospice. Perspectives were solicited through an openended electronic questionnaire survey which sought understanding of (i) what de nes a terminal discharge, (ii) variations from norms encountered in practice, (iii) critical information they often did not get in referrals (and needed to ask), and (iv) suggestions for improving care in a terminal discharge. Four senior physicians (three palliative medicine registrars performing their hospice rotations and a principal resident physician in HCA) and one triage nurse were surveyed. Study information and links to the survey were shared with participants through email. If the staff had not replied after two weeks, a single reminder was sent. This method of data collection was deemed most appropriate during the Covid-19 pandemic; it additionally facilitated unhurried and re ective response to questions posed.

Data analysis
Quantitative data were statistically analysed to describe baseline, process and outcome characteristics in this special group of patients. Where appropriate, key attributes or factors were compared against another group of patients that died during the same period who received regular care. To compute 'mean contacts per service day' for each group in particular, individual patient ratios of 'total contacts' over 'length of service' were averaged. We used SPSS 21 for statistical tests (e.g. independent t-test, chisquared test). Qualitative data was thematically analysed for common threads that addressed questions posed. We used Excel 2016 to facilitate this component of data analysis.

Ethics
This study was reviewed by the SingHealth Centralized Institutional Review Board (Reference number: 2021/2272) and was determined to not require further ethical deliberation as a service evaluation. This decision was received on 4 th May 2021.

Results
In 2020, the hospice served a total of 3,711 patients; 2,928 of these patients were new admissions in the year. In total, 2,062 records of deaths were captured in the data, 1,844 for regular patients and 218 for those with prior terminal discharge. Figure 1 presents the ow of terminal discharge referrals between 1 st January 2020 and 7 th January 2021. The service received a total of 260 referrals for terminal discharge in 2020. This translates to a mean of one terminal discharge per workday, though in reality there were peaks and troughs. Majority of terminal discharge referrals were new patients (n=199; 76.5% of 260 referrals). The remainder (61 patients) involved prior admitted patients known to the service.
228 patients (87.7% of terminal discharge referrals) made it home. 18 patients (7%) died before any home visit could be conducted, and only telephone support was rendered. 195 patients (75% of 260 patients) eventually died under home hospice care. One patient was a resident of a nursing home and died there. Four patients did stay home for varying periods, but nally died in hospital following readmissions. As of 7 th January 2021, ten patients 'survived'; ve patients were discharged stable from the service, while ve continued receiving regular home hospice care. Table 1 compares the characteristics and service utilisation between terminal discharge patients and nonterminal discharge patients. 1,844 patients who died in the same period (non-terminal discharge patients) were used as a comparator group. The mean age of terminal discharge patients was about 76 years, with an older cohort noted in the non-cancer group (difference=10 years; p<.001). Terminal discharge patients presented with a near-equal distribution of cancer and non-cancer diagnoses; this differed from HCA yearly service's norm of 80% cancer patients to 20% non-cancer patients. More females were referred for terminal discharge compared to males. Otherwise, terminal discharge patients were similar to the nonterminal discharge cohort in terms of age, ethnicity and religion.
Deeper data analysis revealed an interesting observation. Most terminal discharges were arranged for patients who had sudden irreversible deterioration. Albeit ending with the same outcome of death, a small group was discharged home however under extraordinary circumstances. In this cohort, six patients (0.03% of 200 deaths) were discharged from hospital intensive care for ventilator withdrawal or terminal extubation at home.
Findings on service utilisation patterns are presented next. The median length of service for deceased terminal discharge patients (n=200) was four days. In fact, 75% of terminal discharge patients (150 out of 200) died within seven days of discharge from hospital (IQR: 4-7 days; range 0-121 days). In contrast, deaths occurring less than one week after admission among patients on regular hospice care constituted 179 out of 1,844 deaths (9.7%).
During the year, a total of 54,981 contacts (including phone calls and home visits) were made for all 3,711 home hospice patients served. 1,778 of these contacts were related to 210 terminal discharge patients supported. Out of those, 1129 were phone calls (63.5%) while 649 were home visits (36.5%). Terminal discharge patients received an average of 1.78 contacts per service day (SD=1.44) compared to non-terminal discharge patients who received 0.62 contacts per day (SD = 1.08). After a terminal discharge, patients hence needed 2.9 times more service contacts from home hospice staff than regular patients (p <.05).
In the remaining sections, ndings from thematic analysis of survey responses are reported. All ve home hospice staff who acted as terminal discharge liaisons completed the survey. One registrar replied after a reminder was sent. Their pro les are shown in Table 2 below.
Three key themes were located. Given the volume and diversity of information contained within, individual elements are tabulated for better clarity.
Means different things to different stakeholders Apart from minor differences around exact prognosis that quali es for a terminal discharge, respondents shared almost similar understanding of what de nes a terminal discharge and its implications. Myriad facets from their collective perspectives are summarised in table 3.
Their experience interacting with other stakeholders within the healthcare system indicated wide deviations from this construct. Patients were referred to them sometimes with an expected life remaining measured in months. These could be instances where there was an anticipated crisis that might result in premature or sudden death, like a possible tumour rupture in someone with advanced liver cancer. What frustrated them most were times when there was no communication nor coordination, and the patient was simply discharged home, only to be picked up later during a crisis call on the hospice helpline.

Handover for continuity
Again, experience accumulated managing transitions from hospital to home for many frail and vulnerable patients produced a list of must-have data in the process of handing over. See table 4. These were sometimes left out in a standard referral and frequently requested by coordinators at handover.

Recommendations on re ection
When prompted to suggest how the process of terminal discharge could be improved, respondents shared their suggestions on areas for improvement, presented in table 5.

Discussion
Intrinsic to its primary motivation, there is abrupt change in care plans among different stakeholders to honour a patient or family's wishes for death to occur at home; in every instance, there is expectation of a prompt response to accelerate routine processes on the community provider's part. Study ndings show terminal discharge can be a daily affair, sometimes up to a few a day. A better understanding of caseload, trajectories and needs associated with terminal discharge will bene t service leads or commissioners in designing equitable and effective use of limited resources. One in 14 patients seen by the home hospice team is in this unique situation, majority of whom are seen for the rst time at home as new patients. They are supported intensively over a short period, compared to their non-terminal discharge counterparts. Voices from coordinators on the ground highlight a need to standardise understanding of what makes a terminal discharge, given its primacy and rami cations on care. Pain points and areas for improvement are agged. Healthcare providers in relevant domains, whether at the institutional level or in the community setting, could apply some of these recommendations to devise new ways to optimised quality and even safety whenever terminal discharge as a medical intervention is offered.
A key nding that came up was how hospital providers had interpreted terminal discharge differently, with implications on survival after terminal discharge and ultimately, overall care burden and length of service. Consistently extending already strained resources to respond to an urgent terminal discharge and then discovering otherwise could stretch hospice providers further, potentially leading to apathy or even burnout. 22 Among all palliative care providers locally, the phrase 'terminal discharge' 14 invokes a context similar to that described by Gambles et al in their rapid discharge pathway, 4 targeted at patients who were in their last hours to days of life. 4 Hospitalists who care for critically ill patients however might not be aware. A systematic review by Hui et al noted that although the terms 'actively dying', 'end of life', 'terminally ill' and 'terminal care' are regularly used, they are not always clearly or consistently de ned. 23 The interpretation ascribed to 'actively dying' in the article is pertinent here: "The hours or days preceding imminent death during which time the patient's physiologic functions wane". That said, another fasttracked discharge program in United Kingdom that aimed to send patients home within 72 hours, the hospital palliative care team involved had extended eligibility criteria from two to six weeks when they realized signi cant numbers of patients had not made it out from hospital in time. 24 In our cohort, terminal discharge was not 'completed' for one in four patients referred.
Findings derived using a mixed study approach have raised points of contention and areas for improvement that are contextualised to the real-world setting. With strong ecological validity 25 , these observations and recommendations have practice implications among all types of community providers.
Available evidence indicated yet another aspect that did not surface here, which is that of pre-discharge stakeholders' meetings. 3,4,12,24 These provide platforms for joint assessment of patients, open discussion of risks and limitations in a terminal discharge, address caregiver ambivalence or any change of mind, and nally, coordination with community providers, including arranging equipment and supplying medications. The opportunity for stakeholders to connect beforehand is desirable, since the majority of terminal discharge referrals (three in four here) are made for new patients not previously known to the hospice. In our experience, problematic issues around de nition alignment, patchy handovers and differential expectations raised in this study are always minimised in the process.

Study Limitations
Although a fair number of terminal discharges were accrued as data points, this study was conducted within one hospice in Singapore. Results may not be fully generalisable to healthcare systems elsewhere. Only ve terminal discharge coordinators in the hospice were interviewed. Members of the multidisciplinary team that attended directly to these patients could provide even deeper insight into the area on 'needs', particularly challenges around service exibility and job burden that might have compromised other patients' care. 12 Similar to what other authors reported, there is a need to obtain the voice of family caregivers-the other major stakeholder. 11,14 After all, they are the ones that will live with meaningful memories (or sometimes regrets) in bereavement.

Future development and research
A critical piece would be around de ning "terminal discharge", including its indication, assumptions and work ows. Only then can a robust framework be built for its smooth delivery. This mandates a multi-prong approach in training and education, not only of healthcare providers but also care recipients offered a chance at terminal discharge, for right expectations from the outset. Individual recommendations offered here could be trialled to study effectiveness and value. Quality improvement methodologies are not only appropriate yet pragmatically feasible for that purpose. 26 From the perspective of hospice providers, proper medical handover remains a priority for seamless transfer of care. Collaboration between hospital and hospice is ideal in this instance, potentially to design a care protocol jointly, followed by formal evaluation. To test the terminal discharge model further, any future research could study it from a systems perspective 27 , using a realist framework 28 for example, and involving all key stakeholders. Lastly, considering societal preoccupation with dying at home and apparent prevalence of terminal discharge, policy makers would be interested in its cost and impact evaluation. 5,6 Conclusion When all else fails and the medically ill in hospital is anticipated to die in days, the patient may be offered a rapid discharge home, supported by a dedicated family caregiver and assisted by a hospice at home team. Although fraught with much stress and many challenges, when appropriate goals are set and intervening procedures coherently managed, different stakeholders can deliver a good death at home as a parting gift to the dying, leaving enduring meaning and satisfaction afterwards. 4,11,29 Declarations 24. Moback B, Gerrard R, Campbell J, Taylor L, Minton O, Stone PC. Evaluating a fast-track discharge service for patients wishing to die at home. International journal of palliative nursing. 2011;17(10):501-6.   Guide hospital providers who may not be familiar or trained to prescribed drugs (to bring home) in anticipation of emerging symptoms in the dying phase.

Transfer memo
Template for hospital providers to follow; minimally, it must contain medication list, speci c concerns or instructions, and how to certify death if it occurs enroute.

Caregiver diary
Written instructions for caregivers who may not retain everything shared before going home. Helpful for home care providers to continue brie ng where it was left off.

Palliative team
Primary teams unfamiliar with organising a terminal discharge should consult their hospital palliative care team for assistance, either through a referral for direct consult or remote advice on the phone.

Single contact
Hospice teams to consider a single point of contact for all terminal discharge referrals, and possibly use a dedicated team to handle terminal discharge if prevalent so as to minimise disruption to regular patient care.