## 11 Hospice palliative care day unit

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### Hospice / Palliative Day Care Unit

What is meant by Day Care (sometimes termed Day Hospice or Palliative Care Day Unit)?
It is a model of care designed for patients being cared for at home (or in the home of a relative or in a Nursing Home/ Rest Home). It enables them to receive attention to all aspects of their illness and suffering; to receive physiotherapy and occupational / music / art therapy; to meet with others in similar situations to themselves in a friendly social /non-clinical environment

### What benefits can Day Care offer?

The patient is enabled to remain at home as long as possible (which is what most say they want) and by attending the Day Unit

- They benefit from seeing the palliative care nurse (and the medical specialist if the nurse deems that necessary), being encouraged to report every aspect of their suffering, ask all the questions they want to and get all the advice they need. When needed, they can have wound dressings done, constipation dealt with, bladder lavage and catheter change.
- They benefit from seeing palliative care- trained physiotherapists, occupational/ art/ music therapists for what is, in effect, rehabilitation – helping them to live life to the full within the limits set by their illness Experience shows that they take up new hobbies and interests, become more positive in outlook, and consequently experience fewer symptoms.
- Caring relatives benefit from a few hours free to do whatever they want to do, to have a well-earned rest or have time on their own with some of the palliative care team to ask questions, get advice and, above all else, feel supported.

It is very possible but not proven that patients attending a Day Unit are able to remain at home longer than would be the case if they had not attended one. There is much anecdotal evidence that relatives feel it is less stressful caring for a patient at home if the patient can, attend a Day Unit perhaps one or twice a week. Again there is anecdotal evidence that patients feel more positive, more able to cope, less depressed when they attend a Day Unit.

### How does a Day Unit operate?

The most common model is where patients are brought from their homes in a car or "minibus" (often driven by a volunteer) to the Day Unit at about 10.00 hrs, spend the middle of the day there and taken back home at about 15.00 hrs.
On arrival they are welcomed by an member of staff/ volunteer, join the others attending for a cup of tea / coffee then spend time on creative activities of their choice under the guidance of the therapists, spend some time with the nurse or doctor. Lunch is leisurely, tailored to their needs and energy and often accompanied by a ‘little drink’ if that is what they enjoy. The time after lunch is spent in comfortable chairs, resting, or being entertained by visiting cooks, TV stars, Olympic champions with their medals, local actors, dancers, poets and musicians – most of whom have usually offered their time and services without any thought of payment.

### What accommodation is needed for a Day Unit?

- A hall / room about the size of a large lounge or tennis court with a ramp and doors wide enough for wheel chair entry
- Work tables that might also be used for meals and sufficient chairs for sitting at the table and easy chairs for lounging in.
- A small room large enough to accommodate an examination couch, small table, 2 chairs and (desirably) a hand basin.
- A small room with a table and 2 chairs, filing cabinet, (a computer if possible), and notice board of some sort for use as an office / interview room.
- A toilet which permits wheelchair entry. Ideally the toilet and hand basin should be designed for disabled users.

If funds and space permit it is useful to have two rooms rather than one large one – one for activities and crafts, the other for socialising. Equipment takes up much space so adequate storage space must be provided either in the unit or nearby. Not essential but very useful is a small cloakroom where patients outdoor clothes can be left, and another small room where staff and volunteers can withdraw.

### Where should a Day Care Unit be situated?

The Unit may be part of a hospital / hospice/ palliative care unit OR be in the grounds of a health care facility. It may be run in a church or community hall not otherwise being used during the day. Essential is that there must be easy vehicle access and that it must be convenient for access for the population being served. Long journeys even in comfortable cars, can be tiring for these patients

### What staff are needed for a Day Unit?

- The key member of staff is the Day Unit Coordinator (or whatever title is selected). Their professional background is not as important as their skills, their sensitivity and their understanding of the principles of palliative care. Most have backgrounds in nursing or social work or occupational therapy but in the new role may not use the hands-on skills of those professionals as much as their "person skills".
- A useful ratio is 1 staff member / volunteer to every 2 patients (depending on levels of dependency)
- The nurse and each of the therapists may either work exclusively in the Day Unit or visit it from the wards of the hospice / palliative care unit/ hospital if nearby. (again depending on how many patients there are, what their needs are, how much time needs to be spent with each etc)

The volunteers need very careful selection and comprehensive training (see below). They are directly accountable to, and report to, the Coordinator but are ultimately accountable to the Volunteer Services Manager of the hospice / palliative care service / hospital. They act as friends, assisting with handling frail patients, serving meals and assisting with activities under the direction of the Coordinator or therapist. Or no account do they become involved in clinical matters or attempt to offer professional advice, no matter what is their own background.

### What "creative activities" are offered in a Day Unit?

The answer depends on whether or not there is an occupational therapist and his/her skills and experience of palliative care; on the physical and financial resources of the unit, and the culture of the community it serves.
All that can be done here is list some of the activities to be found round the world:

Clay modelling Painting Pottery Indoor gardening Carpentry Stamp collecting / sorting Computer programming Rug making | Crossword solving Origami Knitting Dress making Enamel jewellery Making greeting cards Computer games

The important thing is that such activities are what the patient wants to do (and has often had as a long time ambition) and not merely ‘divert ional’ – helping the patient forget their illness and fate. Everything done in a Day Unit is geared to enhancing quality of life, restoring dignity to it and giving patients as sense of being valued and useful.

### The use of volunteers in a Day Unit

Usually the volunteers working in a Day Unit have already worked in other clinical areas of the hospital or palliative care service where their sensitivity and calm presence had been noted. Only then are they selected for the Day Unit and undergo further orientation. They are taught the aims of the Unit, the conditions of the patients who will attend the spectrum of suffering they may encounter and how the palliative care nurses and therapists will respond. Above all else they will be taught to be friends and companions to the patients rather than ‘carers’, encouraged to help create the most relaxed, informal atmosphere possible; the type of atmosphere so often described by patients as 'safe'.
For most volunteers their time in the Day Unit will be the closest and most prolonged they will ever have had with people in the final months of life, many of them of similar age to them or their children. At one and the same time as they see some patients psychologically thriving in that atmosphere they will also notice that they are getting frailer and near to death. Over the time they work in the Day Unit they will make many friends all of whom will eventually die, some much sooner than the volunteers had expected. Understanding support as well as sensitive supervision for volunteers is essential.

### Can / should a Day Care Unit accept any type of patient?

Yes, but experience in units that have been operating for many years suggests that patients should be accepted on the understanding that their condition and how much they have benefited / might continue to benefit from attending, is reviewed every 12 weeks. They may then have a spell of not attending and then return after a few months if it is thought they might benefit. If this is not done the Unit may find itself with a patient whose condition is not terminal coming to the Unit for years. This helps neither that patient nor the other patients.
Care has to be taken with particularly young patients who may be discouraged if they attend on days when everyone else is elderly, sharing no common interests with them. Seeing such a young terminally ill person can also be extremely distressing to older patients. Ways have to be found to get around this problem.
Some units find it better to have separate days for the sexes with morning activities and afternoon visitors tailored to each group. For example the men might have visiting football players talk to them whilst the ladies might have ballet dancers or a poet reading a new poem.
It does not seem to matter if people with different illnesses are put together – those with cancer mixing easily with those suffering cardiac or neurological problems. Invariably patients discuss with each other what they suffer from, what care they have had and how long they expect to live. In spite of that there is usually an exceedingly happy, positive atmosphere where everyone wants to help another. It follows, however, that there are times of sorrow when one of their number dies at home or has to be admitted to an in-patient unit. If that unit is adjacent to the Day Unit then they can, and usually do, come back to enjoy the Day Unit with old friends. This is one of the great advantages of any Day Unit being part of a hospital/ palliative care complex rather than free-standing.

### Why should planners consider starting a Day Unit?

- It greatly helps in the care of patients receiving palliative care at home
- It recognises the stress experienced by relatives and gives them a break for a few hours
- It makes it less daunting when the time comes for a patient to leave home and be admitted for terminal care because they have seen such patients coming from the in-patient unit to the Day Unit.
- It is economical to operate, the only expenses being the salaries of the professional staff, the equipment and materials for activities (finished articles are usually sellable to raise funds) and the costs of food and transport costs.

### Can a Day Care Unit be financially self-sufficient?

Craft work produces many items that might be sold, the income helping the day unit. That list would include such things as stools, ornaments, enamel brooches, models, artificial flowers, calendars, Christmas cards. Experience shows that people, particularly friends of the Hospice or relatives, are happy to purchase them but the income usually scarcely covers the cost of purchasing the raw materials from which they are made. What is important though is that patients feel they are not only enjoying themselves but being useful and appreciated.

### Audit of a Day Care Unit

It is essential to audit a Day Car Unit, for all members of its staff / team to take part and for its records to be accurate and open to scrutiny. Topics that might usefully be audited include:

Conditions of patients | Quality of life measurements
Reasons for referral | OT activities and usefulness
Length of time attending unit | Reception of patients on arrival
Transport of patients | The work of the nurse
Views of GPs / family physicians | Finances
Value of different activities | Food likes and dislikes
Transport service | Bowel treatment needed
Work of volunteers | The views of community nurses
Views of relatives | Record keeping
Time spent with relatives | Dietary issues

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