## 18 The final preparations

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### The Final Preparations

The unit has been built or a satisfactory old building adapted. Staff have been appointed and pre-service training started. Within weeks the first patients will arrive. What final preparations will be needed, many of them continuations of work done in the previous months and years?
They are listed here, mostly as questions, in no order of importance or priority.

### Patients’ Records

- Has it been negotiated that each patient being transferred from a hospital will bring his / her up-to-date case notes? Has permission been granted for the palliative care unit to keep them whilst the patient is under care there or are they to be returned to the hospital after copies have been made of relevant section? What is to be done with them when the patient dies?
- What arrangements have been made for records of patients admitted from their homes?
- What about x-rays? Will they be sent to / lent to the palliative care unit or sent electronically as images?

### Investigations

- In the case of a free-standing palliative care unit has it been negotiated that patients may be sent to a nearby hospital for diagnostic procedures such as x-ray, MRI, CAT scan, PET scan, and specimens be sent there for bacteriological, biochemical and haematological ests? Will the palliative care unit be billed or the bill besent directly to the patient?
- Has it been agreed who will read / interpret scans and other sophisticated procedures?
- What transport arrangements have been made for patients needing to go to and from the hospital? Once again, who will be billed? Will they be accompanied by a nurse or a volunteer? If the patient is a woman will it be necessary to have another lady as a chaperone?

### Autopsies / Post Mortems

These are not often requested in palliative care but are recognised as being of considerable value in elucidating the cause of inexplicable symptoms. In certain circumstances they may be required by law.
Where will they be done and by which pathologists? What transport will be used? Will they be traditional “cause of death” examinations or “What caused the following inexplicable symptoms?”

### Relationship with Morticians / Funeral Directors

Close and mutually helpful working relationships are essential if, after death as much as before it, the patient is accorded every possible dignity. Prior discussion with local Funeral Directors is never wasted time.

- Has a meeting been held with representatives of all local Funeral Directors where the ethos of the hospice / palliative care service was explained, when they were shown the entrance for Funeral cars, the mortuary and how there will always be a nurse present when they came to uplift a body? [It should be remembered that in hospitals there is always a mortuary attendant on duty]
- Has it been discussed whether or not a body may remain in the unit until the day of the funeral?
- What arrangements have been made for Jewish, Islamic, Hindu and Sikh patients to be cared for after death according to their beliefs, culture and traditions?
- Has it been discussed what is to happen to the flowers from a funeral, if the family have requested that they be brought to the hospice? Will members of the Hospice Volunteer Flower Team be ready to come in daily (or oftener) to deal with the hundreds of flowers brought from funerals, many of them not suitable for placing in vases?
- Will it be permissible for ashes to be scattered / buried in the grounds of the Palliative Care Unit after a cremation? This is best discussed before the first request is received

### Visiting Guidelines

The questions surrounding visitors for patients are perhaps more difficult and sensitive than many people realise. They require careful thought and must then be explained to staff (as well as being in the Staff Handbook) and visitors.
The key issue is that patients have very limited energy, are easily exhausted yet want to see loved ones and friends and do not want to disappoint anyone. Much as relatives will say they want to be with their loved 24/7 in fact they too become exhausted, find it ever more difficult to leave the bedside, and need a break. Further problems arise in HPCUs in general hospitals; having different visiting times from that of other wards and departments is seen as unfair.

- Will it be limited to specific times except when special permission for other times has been granted? This is probably preferable provided there is flexibility and explanations for decisions are given to all concerned.
- Will it be unlimited, visitors being free to come at any time and stay for as long as they want? Sounds good but is exhausting for patients and not all visitors are sensitive to their feelings but very sensitive to their own ‘rights’.
- Will it be at any time during the day but not at night, with a time limit on how long anyone may stay unless special permission is granted by the senior nurse? This works well.
- Will children be allowed to visit with an adult? Will a playroom or crèche be provided for little ones? There is substantial evidence that children both want to visit and can do so responsibly with no adverse effect on them provided they have been sensitively told what is happening to the person they are visiting.
- What food and drink will visitors be permitted to bring in? Will they be permitted to give it directly to the patient or, in the first place, to report what it is and giveit to the senior nurse on duty? This seldom a problem because people understand how limited is the appetite of people with advanced disease but they may not appreciate how alcohol may be contra-indicated with many medications.
- Will a favourite pet, in particular a well-behaved dog, be permitted to visit occasionally? This is now common practice and many palliative care units arrange visits by Pet-a- Dog.

### Information for Professional Colleagues

Detailed discussions will have taken place for months or even years before the palliative care service starts – discussions about what care it will offer, the type of patients who might benefit from it, the experience and expertise of its senior medical and nursing staff etc. Now is the time to ensure that all doctors (hospital and family medicine), nurses (hospital, community and private) know everything they will need to know about the new service and what it will offer them The following questions might be asked.

- Will there be a reception in the palliative care unit (wherever it is – hospital or community) before it opens to patients to which are invited all local colleagues. They can meet palliative care staff, see facilities, discuss collaboration and mutual support, and ask all the questions they have? Experience worldwide has shown that there is initially much ignorance and misunderstanding about hospice / palliative care, considerable scepticism about what it can achieve, and professional fears that existing inadequacies will be highlighted by the new service. Winning their professional support and understanding is crucially important
- Will information leaflets or packs about the palliative care service be sent to all senior medical and nursing staff (hospital; and family medicine) a week or so before the service starts. Will the service accept referrals via completed application forms sent by mail (often too slow a process in the rapidly-changing condition of many patients needing palliative care), over the phone or by email? Will each referral be assessed by a palliative care doctor or nurse prior to admission? What is the minimum information the service will expect when a patient is admitted? How will emergencies be dealt with?
- Have discharge forms been produced to ensure that all relevant information about a patient can be in the hands of professional careers.
- Have other key people in the community, and often in the lives of patients, been told about the new service – clergy, local and national politicians, social workers?
- Has a press / media conference been planned so that representatives may come to learn what the service offers and does not offer? For this to be a success it isessential that

- the event is planned with the help of a public relations expert
- a press pack is produced and given to all attendees. Brevity is of the essence!
- senior staff are chosen to respond to questions and briefed accordingly. They must be prepared for difficult questions on current standards of terminal care in the city or county, euthanasia, physician-assisted suicide, DNR, “Living Wills”, litigation, falling standards of care etc..
- every opportunity is given for photographers to film the unit
- photographs are made available to them of senior staff together with mini-biographies.
- A brief history of hospice / palliative care worldwide is in the press pack.

### The final “dress rehearsal”

Before patients are admitted the local Fire Department, Ambulance Service and Police Department must be informed. Each will want to send representatives to see the unit, the Fire Department ascertaining the fastest route to reach it, the escape exits, the fire alarm control board, positioning of hydrants, dangerous chemicals etc. The Ambulance Service will also plan routes, position of entry doors, where trolleys area parked etc. The Police may have already been through the whole building, its Drug Squad checking the security of the Pharmacy / Drug Store, others checking security, staff screening etc.

In the last week before the service starts, particularly if it there are to be in-patient beds there must be a rehearsal involving a “patient” being brought to the unit, being welcomed by the nurse who will be looking after him/her, receiving the accompanying relatives, going through the admission process, explaining the routine of the unit, meals, visiting, how important every little detail is in this care, the doctor introducing him/herself, what happens at night. Every effort must be made to make it realistic, even to the extent of finding weaknesses, staff making mistakes, forgetting to mention fire drills and routes of escape, potential difficulties, patients unwilling to stay, relatives who misunderstand hospice care and think it is euthanasia etc.

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