## 10 The free standing unit

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### The ‘Free – Standing’ Inpatient Unit / Hospice

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 general public (except in French speaking countries) still seem to prefer the term ‘hospice’ whilst health care professionals understandably prefer ‘palliative care unit’.
What makes any palliative care unit or hospice different from a hospital is not its size (although most are small units with 20- 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. Annual mortality statistics are the starting point:

- What is the total number of people who died in that community?
- What is the main cause of death
- Where do people die? Own home, care home, home of relatives, hospital?
- Where do they say they want to die? (Almost all will say ‘home’)
- What is the trajectory of death? (Slow decline, alternating highs and lows etc.)

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 ‘terminal 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 in order 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.

### Will the unit engage in professional education and training?

When training others in palliative care the most difficult task is to change attitudes and to acquire the right communication and practical skills. So practical training is a vital part of the education project and an in-patient unit is the place where this can best be done. Indeed it can be questioned whether or not any palliative care service should ever be started if there are not plans to engage in education and training.

### 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 palliative care services 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.

### 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 drugs 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?

### What can you learn from others?

In the planning period it is good to visit other similar facilities existing in the country and to learn from their success and failures. If you are the first to open a hospice in your country and maybe you have been abroad and have been impressed with one specific hospice and have learnt about its functioning, policies and operational procedures be realistic in what you can use in your specific situation, what needs to be adapted and what needs to be left out. Do not try to clone a unit that has impressed you!

Go on the Internet and look for palliative care sites and official documents regarding palliative care like Rec (24) 2003 of the European Council. Doing work in advance might save you from ending up with a building that cannot be registered in your country and is not suitable for the needs of the 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.
- Will they all patients be in the terminal stages of illness or might some have chronic, not-life-threatening conditions. Possible eligible patients are listed inClinical Practice Guidelines for Quality Palliative Care National Consensus Project). p.4

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 terminal illnesses (end-stage dementia, AIDS, vCJD, terminal 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 has to 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.

### How many beds will be needed?

For administrative / economic / efficiency reasons a unit smaller than 10 beds is not cost efficient unless catering, stores, supplies, central heating, security, pharmacy etc are available on site or in an adjacent unit / hospital
It is generally accepted that in a population of 1,000,000 the number who will need a palliative care bed is:
With malignant disease ……………….400-700 per 1,000,000 population
With non-malignant disease…………..200-700 per 1,000,000 population
Deaths of those with neurological diseases ……17/100,000 population
Deaths of those with psycho-geriatric disease….…..4/100,000 population
Deaths of those with chronic cardiac / respiratory disease….. 500/100,000 population
As guidelines, typical statistics for hospices in the West are

- Average length of stay 11-14 days (lowest when there is a community palliative care service- CPCS)
- Average age 65
- Deaths at home 40-50% (not necessarily higher if there is a CPCS)
- Is the hospice going to have an incorporated outpatient / ambulatory clinic or maybe a day hospice / unit or other palliative care services? If so this will affect the number and type of rooms, toilets, ambulance and car access, wheelchair access, the need for activity rooms, treatment rooms and equipment.

#### Will there be an educational programme? (See separate section for fuller discussion)

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

#### Staffing the unit

In countries with no tradition of hospice / palliative care there be some initial difficulty in recruiting but such is the attractiveness and professional satisfaction to be gained in palliative care that recruiting is soon not a problem. It goes without saying that staff selection, support, pre-service training and employment legal requirements must be as strict as in any other health care unit.

#### Nursing staff

A good rule is to aim for a nurse/patient ratio of not less than one nurse to 1.5 patients throughout 24 hours. At least 50% of nurses on duty at any one time should be registered (ie trained) nurses, the others nursing auxiliaries who have undergone basic nurse training plus in palliative care nursing training. Most experienced units do not use student nurses rotating through different specialties, able to spend only a few weeks in the palliative care unit, but have a permanent, designated palliative care staff.

#### Medical staff

How many doctors needed depends on:

- The number of beds, and whether it is a short-stay or a long-stay unit.
- Whether the doctor will also be involved in any community palliative care service.
- Whether the doctor will be responsible for advising in a Day Hospice
- Whether the doctor will also work as part of a hospital palliative care team
- The amount of education, research and management expected of the physician.
- Whether he / she will be supervising junior doctors
- Whether he / she will have administrative responsibility
- Whether he / she has time for research written into his contract

A rule of thumb is that one full time physician can:

- look after 10-15 beds
- provide the medical input into a community palliative care service caring for 40 patients at any one time,
- be available to advise in a Day Unit and
- spend up to 3 hours/week on education.

Junior doctors who rotate through the unit for experience should not be regarded as service providers because they require so much of the senior physician's time in supervising and teaching. A critical issue is "out-of-hours" cover. For the sake of patients and nurses, it should not be provided by a doctor (senior or junior) lacking experience in hospice/palliative care. This cannot be overstressed.

Extensive experience in the United Kingdom shows that units with full-time physicians have a higher admission and discharge rate of patients, and provide more education, than units served by part-time visiting physicians.

#### Social work staff

It is essential that every comprehensive palliative care service (which may include in-patient unit, community care, day care and even hospital palliative care team) has an experienced social worker on staff. It is, however, recognised that in many countries there are few, if any, social workers and even fewer with training / experience in palliative care Their work will usually focus as much on staff as on patients and relatives, and be concerned with coping strategies, loss and personality problems.
The "simpler " tasks of a social worker, such as facilitating discharge, arranging help in the home, obtaining financial assistance, making special holiday arrangements etc. can usually be dealt with by someone appropriately trained, though not necessarily accredited / paid as much as a social worker.

#### Professionals allied to medicine

Any in-patient unit with more than 15 beds, regardless of other services it provides, will need a physiotherapist on staff. Units with 30+ beds need a full-time one. Good palliative care involves rehabilitation, not simply the aim of getting patients back to their homes and loved ones. For this a physiotherapist and, if possible, an occupational therapist are essential.
Very useful but not strictly essential are clinical pharmacists, clinical psychologists, dentists and podiatrists. Often they offer their voluntary services for new hours a week. (See “Volunteers”)

#### Pastoral care staff

It is axiomatic that a hospice/palliative care service and its team pay due and equal attention to the spiritual needs of the patients as to their physical and psycho-social needs. This generally means that a priest, clergyman or someone trained in pastoral care should be on staff, or be readily available. Larger units (of > 25 beds) need a full time pastoral care worker if possible. Others may use local clergy. It must be remembered that this "chaplain" will also support staff and volunteers, contribute to and organize educational courses, and conduct many funerals. In increasingly multi-faith societies it is necessary to have access to Rabbis, Imams, Hindu teachers etc.

#### Volunteers (see separate section)

#### Administration and Management

From the earliest planning days three important groups of people are needed
A planning group composed of mature people familiar with (though not necessarily expert in) hospice/palliative care, able to contribute experience and skills in management, building, law, health care administration, medicine, nursing and spiritual care. Once the unit is operational this group may stand down.
A trustee group who will be legally responsible for the affairs and operation of the unit, advised by the planning group and
A professional advisory committee, non-executive but immensely important and influential group, reporting directly to the Trustees. Much of the efficiency and credibility of the unit will flow from this committee and its influence and guidance. Its members, usually 10-12 in number, should be representative of specialist hospice/palliative care (both medical and nursing), general medicine, oncology, hospital and community nursing, social work, education and research, as well as representatives of the church, and professionals allied to medicine. As with any committee much depends on the authority of the chairperson who must be able to meet regularly with the senior hospice staff. Its responsibility is to advise on all aspects of the professional work of the unit, including staffing levels, recruitment, documentation, protocols, audit, curricula, relations with other clinical services, research and possibly ethics etc.

#### Appointment of senior staff

Provided there is a Professional Advisory Committee and the Trustees, the order in which senior staff are appointed hardly matters, though logically the senior administrator/chief executive should be given priority, followed by the senior medical and nursing staff, each of whom will then share in the recruitment and appointment of their own staff members.

It cannot be over-emphasized that even the smallest hospice/palliative care unit must be run on business-like lines, with well defined lines of accountability and communication, written down procedures and protocols, review systems in each department, clinical and organizational audit systems which operate from Day 1, and a defined public relations policy.

Being well-meaning and compassionate (as are all people in hospice/palliative care) is essential, but this can never substitute for clinical and organisational efficiency, however small the in-patient unit.

#### Financial matters (for the building and for the day-to-day running of the unit)

Experience suggests that raising capital for hospice/palliative care is relatively easy when people already know what it is and how it can help them. The bigger challenge is raising sufficient revenue to maintain the service, particularly if there are in-patient beds.

The most expensive item is salaries, usually accounting for 80-85% of costs. Though hospice/palliative care beds are certainly slightly more economical than beds in acute or even long stay hospitals, they are still very expensive. A good rule, when planning an in-patient service is to budget for revenue requirements only 10 % less than current costs in local acute units.

#### Disadvantages of a free-standing unit

- Cost, usually 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 terminally ill are cared for.

#### Recommended reading

Gomez-Batiste X, Higginson IJ 1(2008) Where people die (1974-2030) Past trends, future projections and implications for care. Palliative Medicine 22(1)pp 33-41.

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