St. Catherine’s Hospice Crawley : Thursday 27 th April 2023.

The following is an edited account of the event.

A number of different community groups were welcomed at this event, which was hosted by the St. Catherine’s Hospice Spiritual Care Team at the Connections Centre, situated in Malthouse Road. Hannah, Kate (Wellbeing Service Manager) and Brenda (Senior Counsellor), offered their very warm respects to all. Hannah suggested that the event will have many positive effects, but most importantly she hoped it will prove to strengthen the relationship between St. Catherine’s and local communities. She made sure to invite all present to feel as much at home as they are able and began to set out some of the essential background information, relating something of the role and mission of the Hospice establishment.

All of the patients at St. Catherine’s are terminally ill, some are admitted with only a few days and others, merely a few hours to live. The Hospice movement was set up by Dame Cicely Saunders (1918 – 2005) in 1967. She was by and large, instrumental in establishing the discipline and culture for palliative care, that endures to this day. Dame Cicely was a nurse, social worker and physician who recognised the real need to improve the provision for the control of pain and was able to address not only the physical and psychological needs of dying patients, but made considerable inroads towards catering for their emotional and spiritual needs. Dame Cicely Saunders set up the World’s first purpose-built hospice, St. Christopher’s, in 1967 in Sydenham, South East London. Since then, there have been many hospice facilities established throughout the Country. St. Catherine’s in Crawley was started in 1983 and modelled on St. Christopher’s. It is dedicated to the care of patients of all faiths, whose condition is critical. One third of its budget is provided from NHS funding and for the remaining resources, St. Catherine’s relies upon donations of one kind or another. The Covid 19 Pandemic paused the developing progress of St. Catherine’s Hospice. Many of the channels to local contacts and the continuity of fund raising events, were interrupted. Currently local interest is opening up again and we are fostering momentum around the prospect of our new hospice, being built in Pease Pottage. Great excitement and avid interest is growing, regarding the wonderful asset it will undoubtedly be.

The Spiritual Support team has a significant part to play in the day to day life of St. Catherine’s. We are looking forward to the appointment of a new Spiritual Support Lead, who in the past has always acted as Chaplain. Care of the spiritual needs of patients is offered by spiritual support volunteers. This includes those whose end of life care is administered in their homes. Spiritual reassurance is also available to families of patients and their care givers. We have a fundamental role to reach out to and network with, faith and other local communities and to interact with them. St. Catherine’s responds to the needs of the diverse population of the local area, hence the hospice is adapting its facilities to accommodate people of all faiths and those who profess none. There are spaces in the building reserved for multi faith, prayer and worship and quiet contemplation. This initiative will be improved and developed in the new accommodation. We welcome suggestions and ideas that can be included at the Pease Pottage site.

Four volunteers currently work in the spiritual support group and that is the most that have been involved so far, since the inception of the hospice. It provides for a wider selection of opportunities and enables the members of the group to work as a team, providing appropriate comfort and care for all who require it. Spiritual support means different things to different people. Hannah explained that she always hesitates to introduce herself to patients as ‘Spiritual Support’. Many people do not claim to be religious and say ‘I don’t need that sort of support’. Their natural sense of independence and self sufficiency tends to be a first response. However in many cases when patients are given the opportunity to review what their needs are in the context of their impending death or in the case of relatives, a loved one who will shortly die, inevitably questions arise such as : What has my life meant ? Why is God allowing this to happen to me ?, What happens when I die ? Will I meet my loved ones when I die ? Regardless of any religious convictions, patients have an understandable curiosity about such things. Spiritual support has a role to try to establish a rapport with all who come into the place. They have a privileged position that enables them to listen and talk around these issues. They are there to engage with those who may wish to talk about their life and how it has been lived and in doing so, forget for a brief while, the fact that they are a patient in a hospice. Many who are in mid or later life, will want to share a whole history and wealth of information about them self. It can allow a person to realise that they have fulfilled themselves in life and are an individual, not just a patient in a bed who is subject to the care provided. Spiritual support is about being where the patient is and starting from what concerns the patient, so that they are able to chat about it, if she or he wishes it. It is not about imposing the content of the exchange. ‘Obviously there are patients who have profound faith, with strong connections to their faith community and our role is to reinforce them and their loved ones who visit’. This includes welcoming faith leaders and facilitating any appropriate end of life ritual and or prayers that may be administered at the bedside. For others,creating opportunities for them and their families to broach relevant matters, alleviate fears and explore some of the typical reservations that are bound to arise, is most appropriate. Of course there are no easy answers, but spiritual support means setting up situations that enable sentiments of acceptance which provides a comfort in itself. In some cases, anger may be a prevalent response, which predominates a person’s experience in the hospice. Coupled with denial, such temperaments may require that we are not able to reach a cordial connection. As spiritual support, we will respect and abide by a non-judgemental attitude.

For some people, whose condition is debilitating, talking is not always possible. Instead of conversation, support can be given by reading out loud to patients. ‘This activity always reminds me how privileged I am to have a window into our patients’ lives. Alternatively it is just as rewarding to sit quietly in their presence and let them just be, as they are. I always carry some printed verses and prayers which are not necessarily from specific religious traditions. They are prayers about peace, love and acceptance – bite size sentiments that people might like to hear’. The words can be left with the patient who is invited to refer to them in their own privacy.

The role of spiritual support is multi faceted and offered by four individuals in a variety of approaches, which adds depth and enrichment to the services offered. ‘The staff of the hospice, including the nursing contingent are welcome to make use the friendship we offer. It is the medical staff who may well require assistance following a strenuous shift or a particularly emotional encounter with a patient or their family. We are there to offer appropriate support.’

The team is always ready to provide practical advice in the planning of Funerary celebrations. Offer suggestions and help initiate ideas and understanding about what options are possible with regard to readings, music and other elements of the occasion. Patients and families may be introduced to the creation of memory boxes. They are decorated receptacles in which are placed, significant memorabilia and heirlooms that can be passed on to family members, usually of younger generations.

Hannah gave examples of some memorable characters who have been associated with St. Catherine’s :

She spoke of the gentleman who received end of life care as an ‘in patient’ . In his last days he found difficulty in speaking. He had extensive experience as a professional gardener and was able to advise what sort of flowers would grow best in her garden. It gave him the opportunity to be valued by the expertise he was able to contribute. When the time came when he wasn’t able to speak at all, when she went to visit him, she was able to read to him, which he found most relaxing. Hannah visited another gentleman whose wife had died two years earlier. When she went to see him, he was most specific in requesting “I want you to guarantee that when I die I will see my deceased wife !. All I wish to do is die and be with her.” There were no easy assurances to this request. Hannah explained that her approach was to explore with him what it might mean to be with his wife in death and to discuss topics like spirit, soul and everlasting love. His death was made that bit easier for him by the direction of his thoughts. A young man Hannah cared for, told her about his life which was a really rich experience of family. He had a wonderful career and as a younger man he had travelled extensively. He had two teenage children, who he said never caused him a moment’s difficulty. He asked : “Why am I going to die now ?”, “If I had a faith, would I have been given longer to live ?” , and “Do I need to pray and will that change things for me ?” Hannah helped him to review what he had been blessed with in his life and offered the consolation of a book of prayer and sayings. Later he told her that both he and his wife had read them together and found them a real comfort.

Hannah admitted that sometimes the role of spiritual support is not easy, but that in giving of herself in the service of others at the hospice, she is able to realise a wealth of personal benefit. She concluded her presentation with quotation from the writing of Dame Cicely Saunders :

‘You matter because you are you. You matter to the last moment of your life and we will do all we can, not only to help you die peacefully, but to enable you to live until you die.’

This statement is inscribed at the entrance to the Cicely Saunders Institute, where it greets everyone entering the building.

Comments and Questions :

The hospice is named after St. Catherine. What significance does the name hold for the Crawley Hospice ? There are several Saints throughout history named Catherine and the tradition for hospices to be named after Christian saints was usual. These establishments are now available for use by all the community and it is important to remedy any confusion this may cause.

Do you have any strategies for dealing with the emotions of those who are bereaved and it’s effect on you personally ?

‘The benefits of working as a team, means that mutual interests may be addressed as a matter of course. There is always plenty of support available here. However there are occasions when critical circumstances have caused me to dwell upon them and experience some distraction. My inspiration at that time was the memory of a lady who was confined to her bed, whom I visited in a care home. She was barely able to move. Her very positive demeanour was always an example of optimism. She would look out of the widow at the pouring rain and comment “It’s raining outside and here am I warm and cosy in my bed, I feel safe, comfortable and well supported by the lovely people who visit me.” That was her World and I kept thinking “what have I got to complain about?”. It always works for me.’

Would you mind telling us something about your background ?

‘I am retired now, but my career was Safeguarding in Children’s Services . My work enabled me to be with and around people, who intrigue me. I like to work out what makes people tick. I was brought up in Scotland, daughter to Presbyterian parents. My father was a Presbyterian Minister. It was a traditional Christian family, which in my teens I tended to rebel against. I was married and my husband and I had a daughter. I did develop a notion of the higher power or God in my life. Personal beliefs are much broader for me than a narrow adherence to orthodox Christianity. For me, faith is about an influential power or a love that is greater than I am, that is looking after us all and guiding us. That is the expression I appeal to, when I look for guidance.’

A recent radio programme gave the statistics for ‘religious’ funerals as about 1 in 10. The rest are mostly secular affairs. But it was noticed that even in non religious celebrations the funeral director or civil celebrant was asked to include the ‘Our Father’ or a piece of religious music. How does such ambivalence affect the spiritual support provided at St. Catherine’s ?

Our policy is to avoid a specifically religious outlook, if it is not appreciated. As previously stated, we start where the patient and their families are. We take the time to raise the question of what format for a funeral service they are suited to. It is worthwhile noting that some prefer a cremation with no ritual or ceremony. Mostly we would direct families to the funeral director to discuss the options that are available. An organisation called Dandelion Farewells, along with many other other such businesses, offers a non religious arrangement which is committed to respecting the family’s wishes in providing a variety of settings. St. Catherine’s is aware of the confusion which can ensue when members of other faith communities and no faith are confronted with the apparent Christian characteristics of the hospice. Recent changes in attitudes to the expression of faith, involvement in faith communities and such issues as bereavement and end of life care have initiated a review of the structure of provision for it. In times past, when a member of the family died, the deceased was prepared for burial at home. The local community were invited to support the family in the celebration and laying to rest of the body. Since the two World Wars, when news was received at home about a family member whose death occurred on foreign soil, death became increasingly distant and hidden. The Covid 19 pandemic was another junction in this developing trend, when the number of people allowed at the funeral was restricted. Sometimes loved ones died and had to be buried very quickly. It was a brutal scenario. Not surprisingly, some ill informed understandings became prevalent in society as people struggled to make sense of it all. As we regain some semblance of order out of the chaos that has ensued, hopefully St. Catherine’s will be able to redress the setbacks and progress in it’s commission to provide a suitable and lasting organisation in the locality that caters for people to die with dignity.

How much extra capacity will the new hospice allow ?

At the moment we have 12 beds. Before Covid it was envisaged that the new hospice will have 48 beds. This has been narrowed down to 24 beds across two wards. Staffing issues and other concerns currently mean that the new hospice will probably open with 12 beds. This will allow for considerable development in the future. Recruitment of nurses and the increase in the cost of living has required considerable adjustment in planning a budget for the new hospice. It has been planned and is being built, on the basis of a well researched specification that offers to provide as widely as possible for the needs of a diverse community. Local community groups will be invited to view the new site in due course.

In answer to the question how was the land on which the new hospice is being built acquired ? : Hannah explained that the land was donated by a local farmer.

Thank you for your presentation regarding the very valuable work being undertaken at St. Catherine’s. It reminded me of an experience concerning my father, a doctor in Australia who was diagnosed with cancer. In 2006 he refused further attempts at treatment that might prevent the spread of the condition, as he considered his time had come. His only concern was that he should be relieved of any pain he might suffer in the process. Although his parents were practising Christians, he was agnostic all his life. After University, a career in the Royal Air force and his life’s long work as a Physician he posed the question at the end of his life ; what is going to happen to me? As a Scientologist I believe in the spirituality of humanity and that humans live successive lives. The spirit leaves the body at death, in order to inhabit a new life. My father made a point of seeking some possible answers to his question and asked his doctor whether she believed in life after death. Her response was that she didn’t have any specific beliefs in that area. A few weeks later at his funeral, I gave the Eulogy for my father. The doctor approached me after the service and was obviously a little emotional as she told me that the day after he died, my father visited her. She said it was a younger man whom she experienced the presence of, while eating her breakfast and she noted how much my features resembled those she had seen in my father. I believe that this experience was his way of showing me that there is life after death. I wasn’t sure if his appearance to his doctor was to express his thanks to her for looking after him or perhaps some other reason ! She appeared to take it all in good humour. I wondered if you have had any similar experiences ?

Kate responded by explaining that personally she had never witnessed such a phenomenon, but agreed that such situations may occur and had heard of friends of friends who spoke of such things.

Are new patients to the hospice given a full account of the ethos of the place ?

All patients are informed about the range of support that is available to them, spiritual support volunteers introduce themselves, their role and outline the purposes of the hospice. I hesitate to say “Hello, I’m Hannah, I’m a spiritual support volunteer.” Such an approach might not be readily understood. But through a gentle introduction as a member of the Well Being Team and an expression of the willingness that I have the time to listen, a patient is made to feel welcome and at ease and can seek non-threatening support, as necessary. Even those who profess at first, not to need such requirements, after revealing their life’s history, will be happy to continue talking in further sessions. This applies equally to the patient and their families.

Do the rules around general data protection that apply in hospitals, affect hospice patients regarding visits from their faith leader / priest / minister / chaplain ? In the past the faith leader / priest / minister / chaplain would have visited those faith community members as part of a regular routine tour around the establishment. In hospitals, visitors now have to be specifically invited by the patient and the appropriate permissions given and arrangements for the visit made. Under GDPR no information about patients or their religion is available or may be divulged by the hospital or hospice. In the hospice there is a closer relationship between patient support and the patient, it is much easier for a patient or their family to organise visits by a faith leader / priest / minister or chaplain. Providing opportunities to discuss these needs are a priority. If a patient chooses to decline the opportunity, that wish is always protected. A patient’s notes would be amended accordingly. That does not mean that a patient’s wish could not be reversed at a later date. Ongoing support and continuing discussion allows for the progression of the patient’s medical condition.

An example was provided regarding a Muslim patient, who was receiving end of life care in the hospice. The Imam was contacted and a visit to the patient’s bedside made with ease.

Kate stressed how patients wishes can be subtly supported ; as in situations where a patient may have a preference about which minister they wish to visit them, or newly appointed minister they are not acquainted with, whom the patient would prefer to avoid.

Hannah hoped that it will be possible to continue to make contacts in the local community and to develop links with the Crawley Interfaith Network and faith communities. She mentioned that a resumption of invitations of visits to local places of worship in the locality would be most welcome.

The comment was made, that some time ago, St. Catherine’s Board of Trustees worried that it didn’t adequately reflect the diverse community it served and that there were sections of the ethnic community that did not wish to avail its provision. Certainly it was always the case that traditional Hindu families provided their own end of life care. Such needs have developed and as Hindu and other faith traditions have become more established in Crawley, so attitudes change. Young families are not always able to offer care for the elderly in their families. It was suggested that a number of changes in personnel at the hospice over the past few years has led to the discontinuity of existing relationships and difficulties in contact. It was agreed that this is easily remedied.

Hannah explained that when the new spiritual care lead is appointed, renewed contact can be expedited. Furthermore, the relatively recent appointment of Yolanda Fernandes to the Board of Trustees has made inroads to the complexion of the organisation.

Can you give some idea of what end of life care at home means?

Kate reported that with twelve available beds at St. Catherine’s, at any one time there will be possibly 400 plus patients who receive care in the place where they normally live. The hospice has a large catchment area which covers all of West Sussex and East Surrey. That includes those at home and in nursing homes and other institutions. There is a majority who suffer with a variety of advanced cancers but also includes those with learning disabilities, frailties, motor neurone disease, neurological conditions , dementia, multiple sclerosis, Parkinson’s disease and many others. Teams of doctors, nurses, therapists and many others in the caring professions, are sent into the patient’s dwelling place to provide essential care. When it is obvious that their condition has advanced and there is an available bed, they are admitted to saint Catherine’s, where appropriate care is administered.

Is there still an Education Centre at St. Catherine’s?

Kate : Yes you are sitting in it ! We instruct Brighton and Sussex medical students in St. Catherine’s for two day’s, four times per year, on the ward. They receive all sorts of practical experience including training in grief and loss. They meet and talk to a patient and hear what it’s like to experience end of life care.

Please tell us about the staffing at St. Catherine’s.

Kate : The well being team has 6.8 full time equivalent staff members. There are approximately 200 new referrals to the hospice each month, who will require counselling, social work, spiritual care and welfare advice. The practical care team number twelve in total which includes clinical care specialists. There are twenty senior staff nurses and four medical consultants.

Hannah : In all, there are probably 500 volunteers who undertake a wide variety of work associated with the hospice. ‘We always say if it wasn’t for the volunteers, the place would fall apart !’ There is always something to do. In addition there are a number of St. Catherine’s charity shops spread around many of the local towns in our catchment area that generate a considerable amount of the much needed revenue support.

How are people referred to St. Catherine’s – Through hospitals , G.P.s ?

Kate : It is usually the G.P. or consultant. But more important is the influence the referrer has in explaining the need for referral to the hospice. Sometimes the reluctance of the referrer, can affect the way options available to the patient are understood. A key procedure in the discussion avoids the patient having to come to the conclusion, ‘You mean I’m dying’. Consequently the referral may only be made with the consent of the patient. There are situations where the patient does not consent but the family, desperate for support, may well make the request. With the agreement of the patient, the referrer can obtain help for the family in counselling or other assistance. It is important to appreciate that the right decisions about end of life care are crucial and difficult for all to encounter. Providing the best environment and personnel to provide for it is vital.

How easy is it to recruit staff for the hospice ?

We have found that it is necessary to take the time to provide appropriate information and explanation of the personal qualities required for working in the hospice. It does not necessarily appeal to all who work in the medical professions. We offer support to those responding to advertisements, so that they can know what they are required to commit to.

Do you work alongside Macmillan cancer support and Marie Curie nurses?

Macmillan and Marie Curie are a branded nursing service. Those organisations receive their own funding with which they operate. They are not usually involved in hospice care but exist to provide nursing to individuals usually in a private capacity. There is a misunderstanding that although Marie Curie and Macmillan do provide end of life care, it is not usually in the sphere of the hospice.

Did you ever experience the situation of a terminally ill patient, who pulled through?

There was a gentleman whose prognosis implied that he would die and consequently was admitted to the hospice. However for a number of years he survived and was bewildered by the experience. He regularly reminded people ‘I should be dead !’ This is precisely the reason why doctors are loathe to indicate the length of time a terminally ill patient has to live. The patient’s wife was angry because she had planned for her husband’s demise. In the end, like this particular patient, everybody has their limits in life.

What will happen to the Malthouse Road site when the new hospice is ready ?

The revenue accrued from the sale of the Malthouse Road site is an essential factor in financing the new site in Pease Pottage.

I am a teacher in a school that provides for special needs children. There are occasions when it is necessary to broach end of life issues. Apart from a few well used resources, there is not a wide variety of material that can be used in the classroom with youngsters of different levels of ability.

There are organisations and charitable groups that offer assistance for schools. One such is : End of Life Care Jigsaw. another is The Professional Care staff at the Royal Marsden hospital. Give St. Catherine’s a call to find out what we are able to offer.

Certainly within the last Thirty years, St. Catherine’s offered the staff in Crawley schools a regular course in ‘Coping with Grief and Loss in infancy and adolescence’.

Hannah : Addressing these matters will be taken forward in the new hospice along with similar themes and educational activities that can provide children and their parents with approaches to death, including how to deal with the death of a pet and other such approaches.

Iyad Daoud offered the sincere thanks of all present to St. Catherine’s Hospice and particularly Hannah, Kate and Brenda for their extremely interesting presentation, hospitality, generous engagement on our account and the gift of their time for this event. We hope to offer our support to St. Catherine’s Hospice in return.