EVALUATION OF PILGRIMS HOSPICES RAPID RESPONSE … · Evaluation of Pilgrims Hospices Rapid Response Hospice at Home Service When faced with a life-limiting illness, most people say

Laura HoldsworthResearch Fellow, Centre for Health Services Studies, University of Kent

Annette KingKent Academic Lead for NIHR Research Design Service South East Kent,Centre for Health Services Studies, University of Kent

Claire ButlerMedical Director, Pilgrims Hospices in East Kent

Heather Gage Professor of Health Economics, School of Economics, University of Surrey

Simon CoultonProfessor of Health Services Research, Centre for Health Services Studies,University of Kent

EVALUATION OFPILGRIMS HOSPICESRAPID RESPONSEHOSPICE AT HOMESERVICESummary of findingsMarch 2015

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In 2008 Pilgrims Hospices commissioned a reviewof the literature to understand what kinds of homecare services provide the most benefit to patientsat the end of their lives and their families.5 Thoughgood quality evidence was scarce, the findings ofthe review suggested that successful services areable to respond rapidly, focus on supporting familycarers at home and are available 24 hours a dayseven days a week.

Following these conclusions, Pilgrims Hospicesdeveloped the Rapid Response Hospice at Homeservice (Hospice at Home) to support people whoare at the end of life and would like to die at home.The Hospice at Home service operates in additionto established hospice community services and isstaffed by healthcare assistants (HCAs) who havebeen trained at the hospice. The HCAs areavailable day and night at four hours’ notice tosupport patients in the last days of their lives orwhen they experience a crisis.

A research project was undertaken to contributeto our knowledge of hospice at home services.The study was carried out by Pilgrims Hospicesand the Universities of Kent and Surrey, and wasfunded by the NIHR Research for Patient Benefitscheme.

What was the research about?The study aimed to find out whether the Hospiceat Home service enabled more patients to diewhere they wished. To do this, we identified wherepatients preferred to die and where they actuallydied as recorded in hospice notes. In addition,we investigated:• Family carers’ physical and mental quality of life

and their activities as caregivers. This was donethrough postal questionnaires sent out whenpatients were referred to the hospice and eightmonths later to see if there were any changesover time.

Evaluation of Pilgrims Hospices Rapid Response Hospice at Home Service

When faced with a life-limiting illness, most people say they wouldprefer to spend the end of their lives and die at home.1 However, weknow that about half the people with cancer or long-term illnesses stilldie in hospital. Fewer than a quarter die in their own home.2 Patientsare often admitted to hospital because of a crisis such as uncontrolledsymptoms, carer fear or stress, or not having medication availablewhen needed.3 Community based palliative care teams can help insuch situations.4

HOSPICE AT HOME SERVICE:BACKGROUND AND DEVELOPMENT

Acknowledgements This report presents independent research commissioned by the National Institute for Health Research (NIHR) under itsResearch for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0808-16126). The views expressed arethose of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. The study was sponsoredby East Kent Hospitals University NHS Foundation Trust (EKHUFT) and supported by the Kent & Medway ComprehensiveLocal Research Network. The service was funded by NHS Kent and Medway. The authors thank Andy Alaszewski, HelenAlaszewski, Jerome Cheynel, Paula Evans, Caragh Flannery, Nicola Le Prevost, and Rose Ward for their contributions to thestudy. The study partners are also grateful to Marie Curie Cancer Care, South East Health Ltd, Kent County Council, KentCommunity Health Trust, EKHUFT and various GP practices across the county for providing service utilisation data.

CanterburyIntervention(Hospice at Home +usual care)

Intervention(Hospice at Home +usual care)



Control(Usual care)


Thanet

Control(Usual care)

Control(Usual care)


Ashford

Jan 2010 July 2010 Jan 2011 July 2011

Figure 1: Timeline of service delivery by area

3www.kent.ac.uk/chss

• The costs of the Hospice at Home servicewhich we compared to costs of usual care.

• The experiences of bereaved family carersthrough interviews.

How the research was carried out The Hospice at Home service was introduced instages across each of Pilgrims Hospices’ threesites at six monthly intervals (see Figure 1). Thiswas the most practical approach so that newstaff could be recruited and trained. NHS andsocial care service providers were made awareof the service as it became available in their area.We collected data across all areas during thestudy period so we could compare whathappened in areas where the new service wasavailable (intervention group) to those where itwas not (control group).

Throughout the study, all patients received usualservices from all providers of health and socialcare. Whether or not patients in the interventiongroup actually received the Hospice at Homeservice depended on their individual needs.

An advisory group of patients and carers fromPilgrims Hospices met regularly to provideguidance to the research team throughoutthe study. We are grateful for their support.

4 Evaluation of Pilgrims Hospices Rapid Response Hospice at Home Service

Outcomes for patientsA total of 953 patients referred to the hospiceduring the 18 month study period recorded apreferred place of death by the time they died(70% of all referred hospice patients). Table 1summarises the characteristics of patients in boththe control and intervention groups. Bar charts 1and 2 show where patients preferred to die andwhere they actually died.

Table 1: Characteristics of patients in the study

We found the following: • The number of people achieving their preferred

place of death was high in both the interventionand control groups (about 60% in each).Availability of the Hospice at Home service didnot affect whether patients died in theirpreferred place or not.

• Patients who had specified care home orhospice as their preferred place of death weresignificantly more likely to achieve theirpreference.

• Patients who lived at home alone were less likelyto achieve their preference, regardless ofwhether the Hospice at Home service wasavailable in their area.

• When the Hospice at Home service wasavailable, significantly more patients stated apreference to die at home (62% intervention vs48% control) and were able to do so (41%intervention vs 26% control).

• Only 36% of patients in the intervention groupactually received the Hospice at Home service.

The availability of the Hospice at Home service didnot improve patients’ chances of dying in theirpreferred place. We think this is because patientsunder hospice care already receive a high level ofinput from services operating in the communitywhich means they are likely to achieve their wishesin any case. However, more patients wished to dieat home when the Hospice at Home service wasavailable and were enabled to do so. This couldindicate that the availability of such a service makea death at home seem more achievable.

Our study also highlights the important role thatfamily play in helping patients achieve their wishes.People living on their own and who therefore mayrely mainly on formal care services for supportwere less likely to achieve their preferences. Thissuggests that family carers are an important partof the support that many patients need. Our workaffirms previous research which also found thatthe presence of relatives increases the chances ofpatients being able to die at home.4

SUMMARY OF THERESEARCH FINDINGS

Interventionn=688

Controln=265

Average age 75 years 74 years

GenderMaleFemale

388 (56.4%)300 (43.6%)

160 (60.4%)105 (39.6%)

Diagnosis CancerNon-CancerUnknown

617 (89.7%)70 (10.2%)1 (0.1%)

239 (90.2%)26 (9.8%)0

Occupancy1

Lives at home withothers

Lives at homealone

Lives in a carehome

382 (65.2%)

151 (25.8%)

53 (9.0%)

163 (66.3%)

69 (28.0%)

14 (5.7%)

1 Data missing for occupancy for 121 patients, intervention n=586and control n=246


0%

20%

40%

60%

80%

Intervention Control Intervention Control

0% 10% 20% 30% 40% 50% 60%

Bar chart 1. Where patients preferred to die Bar chart 2. Where patients actually died

Outcomes for family carersQuestionnaires were sent to 403 carers; 155responded to the first questionnaire and 64completed the follow-up questionnaire. Mostcarers who responded were the patients’ spouseor partner (72%) with patients’ children makingup the second largest group (23%) and theremainder were other family and friends (5%).

Outcomes for family carers with regards tophysical health and depression were largelysimilar between those who had access to theHospice at Home service and those who did not.This finding suggests that the Hospice at Homeservice itself did not have much of an impact onthese outcomes. There was one difference –carers in the intervention group had worse mentalhealth than those who did not have access to theservice. We cannot be entirely sure what causedthis difference, but it may be that more carers inthe intervention group cared for a patient who diedat home, which involved a higher burden of careand greater stress. Nevertheless, we need to becautious about these results because overall only16% of carers in the study responded at the twotime points.

Family experiences of caring at the endof lifeWe carried out 44 interviews with bereaved familycarers between six and ten months after thepatient’s death. Carers were either the spouse ofthe patient (87%) or child (13%) and were mostlyfemale (62%). We asked them to reflect on whathappened in the time leading up to death andwhat they thought about the quality of care andhow their loved one died. We were particularlyinterested in how people made the choices theydid and what constitutes a ‘good death.’

The importance of preferencesWhen faced with decisions about end of life careand where to die, each individual and family isunique in what they wish for or indeed whetherthey consider place of death important at all.Some carers said that patients were notparticularly concerned about this, while otherpatients were. For carers, it tended to beimportant. In our interviews we identified fourcommon themes that shaped the preferences thatcarers had: previous experience of caring forsomeone; wishes and values; ability to cope withthe physical and emotional aspects of caring; andsocial and personal circumstances.

CONTINUED OVERLEAF


Preferences and choices were not set in stone, butwere reviewed throughout the last weeks and daysof life. Sometimes the progression of the illnessmeant that priorities had to be reconsidered. Whilstthis was sometimes difficult, particularly when itappeared that the expressed wishes of a loved onecould not be fulfilled, carers said that they weremostly happy with the choices that had been madeabout the place of death. This was more often thecase when carers had support in changing theirplans and felt it had been in the best interest of thepatient. Thus whilst achieving preferences wasimportant for many, the most important thing wasfor patients to die well.

Carers’ views on a ‘good death’We wanted to find out what carers thought made fora good end of life experience and a ‘good death’ fortheir loved one. For carers in our study, a ‘gooddeath’ meant that the patient was able to maintainmeaningful relationships and a connection to theiridentity as a self-determining person up until death.This meant continuing to be involved in family life,maintaining ‘normality’, dignity, and control. Ourdefinition of a good death from a family point ofview comes from eight separate themes that wereidentified in contributing to a good end of lifeexperience. Some of these themes are illustrated byquotes taken directly from the interviews.

1 It was essential for carers and patients to beable to maintain a normal life despite thepresence of illness as much as possible.

2 Carers wanted to be able to have meaningfulcontact with both the patient and other friendsand family; therefore maintaining relationshipsand a connection to their identity as a wife,husband, or child and not a ‘carer’ wasessential.

“The hospice... enabled me to become[patient’s] partner again as opposed to hiscarer ... so that was priceless”10CM, patient’s partner, patient died at home

3 Having confidence and being able to trust in thesupport given by care professionals wasessential. Many patients and carers were relianton professionals for managing the patient’sillness and helping with caring activities whichmade carers feel vulnerable.

“you build up this relationship of trust and love,really, and, you know, [the district nurses] carefor you and they put their arm around you andthat’s vitally important”38IF, patient’s wife, patient died in hospice

SUMMARY OF THERESEARCH FINDINGS (CONT)


4 Carers expressed concern that they lacked theability to provide care to patients, but when theywere able to support the patient’s choices theyfelt satisfaction with their efforts.

“I’m pleased that everybody helped me to help[patient] to die where he really wanted to dieand I feel he… maybe it’s a funny thing to say,but I think he died happy because he diedwhere he wanted to be. And I think I felt if I’dsent him to hospice to give myself a break,I couldn’t live with that because I would have feltthat I broke my promise to him”16CF, patient’s partner, patient died at home

5 Being prepared, aware, and accepting of deathwas identified by many carers as helping themto cope with caring for their dying relative.

“if you accept that you fought this illness forthree-and-a-bit years and it’s come back againand this time you won’t be able to fight it. …if you accept that and if everyone around youaccepts it as well then the caring is very easy”05IF, patient’s wife, patient died at home

6 Carers felt that the best environment at the timeof death was one which was peaceful, private,dignified, and where the patient could besurrounded by family and friends. Above allcarers did not want the patient to die alone.

“there is no comparison to the hospice spiritand feel and kindness and you’re a person.You’re actually not a number. You’re a person.You’re a real person.”02CF, patient’s wife, patient died at home

7 The control of distressing symptoms was apriority throughout the patient’s illness, butparticularly at the time of death.

8 A few carers spoke about the importance ofhaving time to reflect and grieve immediatelyafter death and how care professionals couldhelp them to transition back to a life notdominated by a care routine.

“The aftercare, after it’s happened, the nursescame back to see me. That was wonderful.Because the [Hospice at Home] couldn’t butthe nurses came back to see if I was all right..... A day later and then a week later theypopped in. ‘Just passing, thought we’d pop inand see if you’re all right.’”38IF, patient’s wife, patient died in hospice

CONTINUED OVERLEAF


SUMMARY OF THERESEARCH FINDINGS (CONT)

How care professionals can better supportpatients and their familiesThe interviews also highlighted a number of waysin which care professionals can better supportpatients and their families at the end of life. Thisincluded:• Explaining what options and support are

available in an evolving situation. • Sharing in the responsibility of making decisions

about care and place of dying. This meansneither leaving families to make decisions inisolation nor making decisions on their behalf.

• Keeping the conversation about wishes andwhat to expect going as long as it is needed.

The cost of the serviceTo find out the cost of the Hospice at Homeservice compared to usual care, we collectedinformation about what services patients usedincluding: hospice care, hospital care, GP care,community nursing, social services, Marie Curieservices, and out of hours services.

We found the following:• Overall costs were the same for the group of

patients who had access to the Hospice atHome service and the group receiving usualcare. This indicates that the new service wascost neutral.

• How and what services were received bypatients in the days and weeks prior to deathvaried greatly and expenditure on the Hospiceat Home service was a relatively smallproportion of total service costs. For those whoused the service, Hospice at Home accountedfor between 4% and 10% of their total serviceuse cost.

• On average, the Hospice at Home team made11 visits to patients.

Whilst overall the new service did not add to thecost of end of life care in the area, different costdrivers came into play at different periods beforedeath. There was no simple shift in service use,such as from inpatient hospital costs to home care,which means that funding for the service cannoteasily be shifted from one provider to another.


CONCLUSIONS

CONTINUED OVERLEAF

While the availability of the Hospice at Home service did notsignificantly increase the number of patients who were able to diein their preferred place, significantly more patients died at home whenthe service was available. The interviews indicated that all supportivemedical and nursing care received at home was appreciated. TheHospice at Home service enabled more people to receivecompassionate care at home.


The case of Mr and Mrs Roberts – anexample of Hospice at Home in actionbased on experiences from the interviewsMr Roberts is a 76 year old man with lung cancerwho was referred to Pilgrims Hospices by his GPand has since been having weekly visits with ahospice Community Nurse Specialist (CNS). MrRoberts has decided that he would like to die athome as long as his wife can cope. Mrs Robertshad been coping fairly well with her husband’scare needs, but recently he has deteriorated andnow requires her help to get out of bed, to washand go to the toilet. One night he experiences veryintense pain and the next day has a visit from hisGP who sees that Mrs Roberts is struggling to helpher husband. The GP arranges to have a districtnurse visit once a day and at the same time makesa referral to the Hospice at Home team whoarrange to have two Healthcare Assistants (HCAs)visit Mr Roberts the very same day. The districtnurse organises a hospital bed to be delivered toMr Roberts’ home and some additional equipment,and the Hospice at Home team arrange to havetwo HCAs visit three times a day for one to twohours. When they arrive, Mrs Roberts likes to usethe time for herself; she’ll take the dog out for awalk or perhaps do the shopping.

The HCAs help Mr Roberts to use the toilet, washhim, and make sure his bedding and clothes areclean. When Mrs Roberts returns, they make hera cup of tea and have a chat with her about howshe’s coping. She says she is exhausted andhasn’t been sleeping, so the team arrange tohave someone stay that night so she can have afull night’s sleep. The next day Mr Roberts is veryunwell so a district nurse puts him onto a syringedriver and he hasn’t woken up since. The Hospice at Home team continue to visit andstill chat to Mr Roberts as they clean him eventhough he is not conscious, which Mrs Robertsreally appreciates. They have arranged to haveSally, an HCA stay for a second night and in themiddle of the night Sally notices that Mr Roberts’breathing has changed. She makes sure MrRoberts is clean and comfortable and then goesto wake Mrs Roberts to let her know that MrRoberts is dying. When she comes down stairs,her husband looks peaceful and she is able tospend his last hours holding his hand, but feelsconfident knowing that Sally is in the next roomif she needs her. Mr Roberts is able to die in hisown home with his wife by his side.

CONCLUSIONS (CONT)


REFERENCES1 Gomes B, Higginson I J, Calanzani N, Cohen J, et al (2012).

Preferences for place of death if faced with advancedcancer: a population study in England, Flanders, Germany,Italy, the Netherlands, Portugal and Spain. Annals ofOncology; 23(8):2006-15.

2 ONS (2012). Deaths registered in England and Wales, 2011.

3 Mantz M and Crandall J M (2000). Palliative care crisis in thecommunity: a survey. Journal of Palliative Care; 16(4):33-38.

4 Gomes B and Higginson I J (2006). Factors influencing deathat home in terminally ill patients with cancer: systematicreview. British Medical Journal; 332:515-21.

5 Stosz L (2008). Literature Review of the Evidence Base for aHospice at Home Service. Canterbury: Centre for HealthService Studies, University of Kent.

Centre for Health Services Studies, University of Kent, Canterbury, CT2 7NFT: +44 (0)1227 824057 E: [email protected] www.kent.ac.uk/chss

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EVALUATION OF PILGRIMS HOSPICES RAPID RESPONSE … · Evaluation of Pilgrims Hospices Rapid Response Hospice at Home Service When faced with a life-limiting illness, most people say