In late 1979, one evening, a kind, compassionate volunteer sat with a patient who was dying of cancer in the Hospital. Gradually the talk got around to the subject of dying. They talked for several hours, at the end of which the patient had managed to give the volunteer instructions about her funeral and her feelings about dying, of which she had never spoken, which was conveyed to her family, who where delighted with the information that they had collectively not been able to get because they didn't know how to approach the patient.

So began palliative care in Bermuda or care for the dying - which led to a massive amount of work being done by the health care professionals and volunteers. This took place with thousands of hours being given by all sorts of volunteers. Specific education was given to registered nurses, nursing aides, physicians, clergy, regular volunteers, bereavement volunteers, massage therapists, fundraisers, donors, hospital staff and the community at large. It was therefore mandatory that all staff from the registered nurses, all across the board, to the housekeeping staff, be specifically trained in palliative care. A palliative care physician was finally added in 1998.

The hospice, Agape House, opened its doors on March 4th, 1991. Its mission was to admit dying patients with all and any diagnoses and to provide those patients with total "symptom control", using all means possible. That meant expert medical, physical, emotional and spiritual care providing absolute comfort and also allowing the patient to finish any unfinished business he or she needed. This would allow the patient to complete his life to his or her satisfaction.

*This Hospice practised as an acute intensive medical care unit and under no circumstances was to give custodial care of any description*.

So the major work of a hospice is not only focusing on "life in the length" but also on all the painful, uncomfortable symptoms, with the assistance of exceptionally well-trained staff members such as finishing unfinished business. This would include the writing of a will or the revision of an old one, finances, property, and relationships, talking with God and perhaps asking for forgiveness. Visiting favourite places, having last conversations, mulling over the past and the future, making funeral plans, bereavement of patient and family. Talking with the family and generally tidying up ones life so that it is complete - leaving nothing behind that would become a problem for ones relatives. Relatives and friends would also be included in receiving some of this symptom control, since death is a family event with broader implications. If this was done well then perhaps the family and patient could see the death as a reasonable solution to the problem!

Dying from a life threatening illness is serious business and all of its implications must be taken seriously, particularly an illness that creates multiple problems that in themselves can kill. This is not a time to provide that patient with minimal care, this is a time to pull out all the stops and intensively solve the problems at hand, so that the patient can cease dying from the symptoms and focus on life.

'Life in the length' is the only goal so that the patient can leave this life in as comfortable way as possible, not scared or plagued with symptoms - we've all heard the horror stories and these scenarios should now be a thing of the past.

In 1997 the hospital took the unusual step of pairing the hospice with a Chronic Care Unit - the Extended Care Unit. Two more diverse types of care could not be imagined. Each area had its own priorities and different kinds of care. Although it is laudatory that cross training is the perspective - it is foolhardy to send staff into a minimally staffed area, the hospice, when those Registered Nurses are too few and too busy to focus on training as well as their daily duties looking after acutely ill people.

The thought was that the hospice and the ECU would take part in cross training. Why? Nurses of the hospice were very already very well trained in palliative care and already knew about the care of the elderly dying patient. It would have made much more sense for the hospital to bring in a palliative care tutor from abroad to train the ECU staff all together, thereby not upsetting the delicate staffing balance at the hospice.

Further a very well trained Coordinator for the Hospice was removed from the hospice and sent to the ECU, whilst her untrained counterpart was sent to the hospice. The former hospice coordinator has since left the hospital and is no longer available. Specifically trained leadership is vital in such a specialised unit, so that continuity of care is unbroken and the trust of the patient and family is kept intact.

Some of the programmes have never been accessed since 1997 such as the Bereavement Service - despite the fact that there were more than 20 volunteers that were trained and were ready, willing and able. Instead this has been left in the hands of a busy medical social worker, who cannot possibly spend the amount of time required for this important work.

In other places the volunteers are coupled together with the medical social worker for this very reason. The Chaplaincy Service was a thriving vital service and it hardly exists in the same state any longer. Spiritual care goes hand in hand with things such as pain control and is absolutely necessary if the medical symptom control work is to succeed. Other programmes that were in their infancy likewise have not been available.

In other jurisdictions the ratio of registered nurses to patients have been one on one. This has been so that each patient gets the level of care deemed necessary for his or her serious, dying condition. The nurse then has absolute knowledge and care of that patient and can communicate very clearly with the family members, who also may be in deep distress, and give both the support that they all require. A very important duty is for a registered nurse to sometimes sit quietly with a dying patient, simply caring, doing nothing else, so that when that patient wakes they know they are safe and cared for. This is the nature of what a hospice is all about. Here at Agape House, there are three different housing levels, making it impossible for the patients to be readily accessible. Often a single registered nurse is on duty with either one or two nurse's aides. They look after anywhere from three to four patients and up to 12 patients on any given shift. It is quite possible for that nurse to have 12 very ill patients - some of them may die on one shift. The degree of care they all need together with their relatives can be awesome.

The Friends of Hospice have been working valiantly but sometimes volunteers have been asked to sit with dying patients without the benefit of a registered nurse to supervise their vigil because of her level of busyness. This is absolutely not on and it smacks of custodial care.

Also the problem seems to be lack of referral from the physicians - this always was a problem - so I ask you - why after eleven years of practice of the hospice, why is there not a normal regular referral system in place? There are bona fide patients requiring palliative care just lying in the hospital not being referred. The hospice costs $200, approximately, less than the daily rate at the Hospital - that's $1,400 more per week, per patient, that the insurance companies have to pay for the hospital patients. This translates into higher premiums that you and I have to pay for health care. That's thousands and thousands of extra dollars every year. Nor do these patients in the hospital receive the same symptom control that are given to patients in the hospice.

In early May, Friends of Hospice chairman, Mr.Robert Caldwell and I, went to see The Hon. Nelson Bascombe, the Minister for Health, and discussed with him the hospice problem. He seemed to be sympathetic and said he would research the subject and get back to us. In spite of follow-up phone calls to his office, nothing has been heard from him since. The Hon. Mr. Quinton Edness, former Minister for Health, on the other hand, was very interested in the affairs of the hospice, whilst he was in office, and it was his vision, energy and support that first gave the hospice its impetus.

Since the hospice now does not have its services intact and since it has difficulty even obtaining appropriate patients, in my opinion, the hospice does not now exist as a hospice. It has become just another ward of the hospital, reneging on a promise given to me by the former Executive Director, Mr.Hume Martin, when the hospice was taken over by the Bermuda Hospitals Board in 1990, that this would never happen. We have taken a backward step in health care just to satisfy a hospital administration that has been unwilling or unable to solve a problem in its midst - such as palliative care referrals.

It takes a huge amount of energy and resolve to keep such a hospice programme on track. The problem of referrals must be resolved. The insurance companies need to speak up and be heard before more money is wasted. Creative intelligence must be used to think outside of the box. It took more than 20 long hard years of work and effort to bring about a freestanding hospice in Bermuda, respected by all and it is now drowning in lack of understanding.

Agape House is a unique addition to our Community Health Care Services and it requires the support of the community and hospital as well as the physicians. The hospital states that it has a policy: "The patient is the reason we are here" - then let it be so in reality.

So I invite all Bermudians, particularly those who have benefited from hospice care, to write your thoughts to the editor of The Royal Gazette or be in touch with physicians or the hospital administrator and call for the hospice to be put back on track working as a full hospice.

Hilary Soares is a former

Agape House Coordinator