Derek Doyle, OBE, MD
A Day Care (sometimes termed Day Hospice or Palliative Care Day Unit) 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.
The patient is enabled to remain at home if possible (which is what most say they want) and by attending the Day Care 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. The evidence base supporting day-services is dated and limited. Dying people find attending PDS a valuable experience that allows them to engage with others and to be supported in a restorative environment. (14, 15) 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.
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 Care 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 a 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.
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 useful is a small cloakroom where patients outdoor clothes can be left, and another small room where staff and volunteers can withdraw.
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.
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, depending on how many patients there are, what their needs are, how much time needs to be spent with each etc.
The volunteers need careful selection and comprehensive training [see Hospice/Palliative Care Volunteers section]. 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 their own background is.
It depends on whether 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||Crossword solving|
|Stamp collecting/sorting||Enamel jewellery|
|Computer programming||Making greeting cards|
|Rug making||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 recreational – 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.
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.
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 does not require palliative care, coming to the Unit for years. This helps neither that patient nor the other patients.
Care must 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 person with advanced illness can also be extremely distressing to older patients. Ways must 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. Despite 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 must 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.
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.
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||Occupational therapy 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|