Free-standing Inpatient Unit/Hospice

Guidelines and Suggestions for those Starting a Hospice/Palliative Care Service, 3^rd edition

Derek Doyle, OBE, MD

A 'free-standing' unit is one not within a hospital, be it a general one or a specialist one. It may be in the grounds of a hospital or totally separate from a hospital, miles away in another part of the town or city. Whether it is called a palliative care unit, or a hospice is a decision that must be made by the Trustees establishing it, bearing in mind that the public (except in French speaking countries) still seem to prefer the term 'hospice' whilst health care professionals understandably prefer 'palliative care unit'. In some countries the name (and requirements) of the facilities is regulated.

What makes any palliative care unit or hospice different from a hospital is not its size (although most are small units with 14 - 30 beds), but the holistic, personalized, flexible programme, and the attitude and focused commitment of the staff.

When planning to open/build a free-standing in-patient unit the following questions must be addressed: Why is a free-standing inpatient unit thought to be needed?

There must be an identified need for care in a hospice according to the pattern of death, and the structure of the society. There must be good reasons why the palliative care unit cannot be within a hospital or palliative care be provided by a hospital palliative care team (HPCT).

A well conducted needs assessment is essential to define the target population, the major clinical problems, the existing services, and networks in the community being served. [See Needs Assessment]

If it is a culture where family bonds are strong and families feel that it is their duty there to care for the patients no matter whatever the cost to them, and the patients want to die in their own beds then maybe it is better to have a second thought and ask if a community palliative care team might be more appropriate or a unit for short stay, for 'acute problems' combined with a such a community team. If patients want to remain at home as long as possible but not die there, a unit may be needed solely for end-of-life care' but it will soon be known as a death house.

If it is a community where there are few relatives to care for their loved ones at home, few nursing homes and poorly developed community services then a long-stay unit is the best solution for offering palliative care. It should be noted that even in a hospice/palliative care unit there can develop the problem of 'blocked beds' occupied by patients who might be better at home or in a nursing/care home, but no places are available.

Will it be a demonstration unit?

If you work in areas where palliative care is in the pioneering stage it might be necessary to demonstrate to the authorities the benefits of hospice, the costs associated with it, the impact of care on the patients and the families to convince them to accept the model and to integrate it into the existing health care system. Making the right choice for the model of care is critical.

The building

What if an existing building is offered or becomes available for purchase? Sometimes hospital buildings become available when re-organization takes place, and some existing buildings are found to be redundant. They may be offered for emerging hospice sometimes with the idea of keeping the workplace for staff who would otherwise be made redundant. Think of all the implications when accepting such an offer. It might not be the best decision for all concerned.

If it is a hospital building offered to set up a 'not-for-profit' unit would the hospice be obliged to forego its high staff/patient ratio, or accept hospital staff without any palliative care training into its interdisciplinary team, or student nurses on rotation through the unit? If yes, then this is not an option and you must find a way to convince your authorities that hospices are well recognized in the world and back up your case with recommendations made by international professional associations or official bodies like European Union, World Health Organization (WHO).

On the other hand, there are some benefits of having the hospice/palliative care unit within the grounds of (but not inside) a general hospital:

Proximity to medical specialists such as surgeon, intensive care specialists etc.
Laundry, laboratory, pharmacy, catering facilities close at hand.
Junior medical staff to share out-of-hours calls.
Proximity to diagnostic services, physiotherapy, occupational therapy, social work, pastoral care.
Heating services and maintenance staff nearby.

Other essential considerations

What other essential things need to be considered at the planning stage?

If it is to be a short stay hospice (most people being discharged within 14 days), what care services will they be able to access when they leave the hospice?
Are the community services well enough developed to take over the care of discharged patients? Are there other services with which you can establish links (social services, primary health care, other charities)?
What arrangements can be made for investigations (radiology, laboratory) or for receiving such further treatments (radiotherapy, surgery, chemotherapy)?
Will the hospice have its own pharmacy and how/where will medications be ordered, procured, delivered, and stored (meeting all national legal requirements)?
Will the hospice have its own mortuary, or will it be able to use the facilities of a neighbouring hospital?
Depending on the law in your country will the hospice need to have a 'cold room'?
How soon after a death must a death certificate be issued? This has relevance to the duty hours of medical staff.
If post-mortems/autopsies are ever needed, where would they be done and how will bodies be transported there?

Target Patients

What type of patients will be admitted to your hospice?

Is the hospice going to be for adults, for children or for both? If you plan to open a unit exclusively for children you are strongly urged to read about them, how they are run, the problems faced etc. in the many books and papers published by children’s hospices worldwide. If children are to be cared for in a ‘mixed unit’ there will need to be special rooms or even an annexe set aside for them and nurses and doctors trained in paediatric palliative care.
Patients at the end of life or might some have chronic, not-life-threatening conditions? Possible eligible patients are listed in Clinical Practice Guidelines for Quality Palliative Care National Consensus Project (13).

For example, will the unit:

Accept children and adults with congenital conditions leading to dependence on life-sustaining treatments and/or long-term care be admitted?
Will people be admitted if they have acute, serious but not necessarily life- threatening illnesses (such as severe trauma, leukaemia or acute stroke), where cure or reversibility is a realistic goal, but the conditions themselves and their treatments pose significant nursing and care burdens?
Will people be admitted with progressive chronic conditions (such as peripheral vascular disease, low-grade malignancies, chronic renal or liver failure, stroke with significant functional impairment, advanced heart or lung disease, frailty, neuro-degenerative disorders and dementia).
Will people be admitted with chronic and life-limiting injuries from accidents or other forms of trauma?
Will people be admitted with advanced serious illnesses (end-stage dementia, AIDS, cancer or severe disabling stroke, cardiac, renal or respiratory failure), from which they are unlikely to recover, and for whom intensive palliative care is the predominant focus and goal of care for the time remaining.

Reading this list is a reminder that strict adherence to the definition of hospice/palliative care is of the utmost importance. It would be well-nigh impossible to care appropriately for many of the above groups in a small palliative care unit but the decision about them must be made before the unit opens.

One must decide if the unit is going to be for:

patients expected to die within days.
long stay patients.
short stay patients admitted, for example, for 10-14 days to control severe symptoms or psychosocial problems (In most units in the West the average length of stay is 11-14 days).
respite care to offer families a break from exhausting care. If so, will such stays be booked in advance or be offered as the need arises? The need for respite care is greatest when the unit is associated with a community palliative care service. One problem is that many such patients are admitted for 'respite' too late and do not return home but remain and die in the unit.

Once the unit is well known in the community there will soon be a waiting list for admission so apart from establishing in your admission criteria you have to establish the priority criteria for admission. It is useful to have a team responsible for the admissions so as not to put too much pressure on one individual.

Educational programmes

If so, there will need to be a seminar room for teaching, space for a library, storage space for equipment, toilets nearby, access separate from the in-patient unit as well as major staffing and therefore financial implications. [See separate section for fuller discussion]

Disadvantages of a free-standing unit

Cost, generally higher than planners expect.
Only able to accept a limited number of patients, a small proportion of the many who need its services.
A management structure that might be unlike those of other local health care units
Families might feel excluded because the patient is taken out of their care.
It is still 'an institution' and as such, no matter how hard everyone tries, it is never 'Home’.
Its practice and principles will not be seen and learned by the many doctors and nurses who work in general hospitals where 90% of the patients at the end of life are cared for.