Different models of palliative care (PC) service play complementary roles in addressing different needs of patients and their families at different stages of their illnesses. Factors affecting the choice of models depend on care factors (see care matrix in introduction section), local health care system factors, and the choices of patients and families.
Home as the natural milieu of the patient, has been shown by many studies to be the preferred place for the last journey of many patients. Nevertheless, there are obvious limitations for the community / home care model, despite its many advantages. Though the hospital -based in-patient palliative care model is a more expensive model compared to the community care model, it is considered necessary from three perspectives:
- In-patient palliative care unit provides rapid, intensive and continuous interventions for patients who are in severe distress; whether physical, psychological or spiritual.
- Hospitals provide medical care to the sickest patients in most countries; hospitals are therefore an important place for patients to access palliative care.
- The integration of in-patient palliative care service within a secondary/ tertiary hospital will significantly affect its philosophy, policy and care delivery towards terminally ill patients.
When planning a hospital-based in-patient palliative care unit, asking the following question may help in setting the overall direction:
Why consider a hospital-based palliative care unit?
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What are the prerequisites of setting up a hospital-based palliative care unit?
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What are the potential limitations of hospital-based palliative care units?
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What type of hospital can be chosen to set up a hospital-based palliative care unit?
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Needs assessment of a hospital-based palliative care service
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Collaboration with other services of the hospital
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Promoting palliative care in a general hospital
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Interface between the palliative care unit and other units
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Setting up of an Inpatient palliative care unit
Why consider a hospital-based palliative care unit?
An in-patient palliative care unit can be either established as an independent hospice, or as a unit within a general hospital. Historically, many palliative care services came into existence as independent hospices with distinct palliative care philosophy. However, recent experiences in many parts of the world have shown that palliative care service can be successfully established within general hospitals as in-patient units. So, are there any advantages of hospital-based PC units in contract to the traditional freestanding hospice?
1. From the care perspective:
- Hospital-based in-patient PC unit can be part of the comprehensive care of cancer and other end-stage diseases.
- Hospital-based in-patient PC unit provides continuity of care within the same care setting. The environmental and psychological adjustment will be minimized for patients and their families.
- The transition of care is smoother from the perspective of health care workers. The communication and transfer of medical information can be easier. Direct face-to-face exchange of information is often feasible.
- Hospital-based in-patient PC units encourage and facilitate mutual referral between curative services and palliative care services.
- The availability of overflow beds within a general hospital will provide a backup support for the palliative care unit.
2. From a team perspective:
- The general hospital setting provides conjoint care by different specialties.
- Several specialties are especially important in End-Of-Life care: e.g. Oncologist, Surgeon, and Liaison Psychiatrists. Usually on-site consultation can be provided within a general hospital.
- Allied health staff plays an important role in the rehabilitation: e.g. Physical Therapy, (physiotherapist), Occupational therapist, and Speech therapist. Sharing of a common pool of Allied health staff is feasible within general hospital.
- Sharing of a common pool of manpower in managerial and supporting staff. Other than providing skill, expertise and manpower; it also but shares fixed costs.
- There is the possibility of rotating junior medical and nursing staff among different units, either as part of professional training or options in future career.
- Apart from the “stable pool” of team member, the system of rotation provides a “mobile pool” of members. Stable pool of staff will be a stabilizing force, but a mobile pool sometimes brings new challenges and creativity.
- Medical staff from units of similar nature can be grouped thus create a bigger manpower pool. This will allow mutual medical coverage for 7 days a week and 24 hours a day.
3. From sharing of common facilities and costing:
- In-patient PC unit shares common facilities of hospital: central oxygen supply, central suction facility, blood bank, X-Ray department, ultrasound facility, laboratories, and mortuary.
- It reduces the burden and distress of transferring patients to other places for investigation
- It allows speedy investigation if indicated. (The role of technologies has to be carefully assessed in the terminally ill so as to avoid medicalization of care).
- Reduction of overall costs by sharing fixed cost or overhead
4. From the perspective of promoting Palliative Care within the hospital
- The in-patient PC unit promotes and demonstrates palliative care within the hospital
- The establishment of an in-patient PC unit implies the acceptance by hospital management that palliative care is a key component of medical care
- An in-patient PC unit has an important educational role for staff in other units.
What are the prerequisites of setting up a Hospital-based palliative care unit?
Does hospital top management, like Hospital governing committee and Hospital chief executive, support the project? Seeking their support, by appropriate means and strategies, at opportune moment is of paramount important.
Have the palliative care concepts been promoted to the key influential personnel? e.g. head of other departments. Without the support from other units, the chance of success will be much l. reduced
How to closely collaborate with hospital administrators? Patience is essential in communicating the care concept behind the design of the unit. (Negotiation with administrators can be a major stress for PC workers in such settings).
Is suitable space available for the unit?
What is the minimal set-up budget and recurrent cost?
How to raise funds for both the set up cost and recurrent expenditure?
Is the source of patient referral secured?
Is patient accepting the care setting and care model?
Doing feasibility study: space, money, sort of finance, staff, examine priority
What are the potential limitations of hospital-based palliative care units?
Hospital-based PC units will unavoidably face the issue of compliance to the culture, traditions, and style of the management of the whole institution. Besides, more specific issues need to be addressed such as direction of the service, philosophy of care, competing goals, and inflexible institutional regulations. It is important to anticipate the restrictions:
- What will be the priority of this PC unit within the general hospital?
- Is there adequate autonomy in managing such unit?
- Is there any pressure to minimizing length of stay within general hospital setting?
- Are there unreal expectations from patients and families of adopting prolonging life measures, as in other units?
- Is there pressure coming from other units? What are the sources of reasons for such pressure?
- Are there resentments from other staff? Resentment can come from the better environment of the unit in contrast toother wards and competition for resources.
- Are there a separate salary scale and welfare benefits for PC staff?
- Is there any competition for funding with other units?
- Is the assigned ward space adequate to design a suitable environment to delivery the philosophy and standards of care?
What type of hospital can be chosen in which to set up a hospital-based palliative care unit?
Hospital-based In-patient PC units have been established in secondary, tertiary hospital or specialized hospitals like cancer hospitals. The nature of the hospital can be acute general or rehabilitative. Its direction can be a service-oriented hospital or a teaching-based hospital. From certain perspectives, establishing a new PC unit is easier within a service-oriented or rehabilitation hospital. The issue of competition is less. It is also easier for the staff in these settings to adopt palliative care approach without having a paradigm shift in care. Philosophy. Establishing PC units in teaching-based hospital has been successful in certain place. Other than demonstrating holistic care towards cancer and the terminally ill patients, it also greatly promotes palliative care to medical students, nursing students, and allied health students.
Needs assessment of a hospital-based palliative care service
Objective needs assessment at local level is perhaps the most important step in defining the need/ model of unit. Objective needs assessment will crystallize the vision, mission and goals of the PC unit to oneself and the hospital management. It is also pivotal to guide planning. While planning needs assessment, asking the following questions may be helpful -
- Which diseases in particular will be benefited from such unit?
- Using hospital data: how many deaths of such diseases occurred per years?
- If other models of palliative care service already exists existing palliative care data can be used for needs assessment. How many patients within PC service require in-patient stay?
- What are the key indications for an in-patient unit?
- What is the prevalence of symptoms that require in-patient care?
- How do patients and their families accept / perceive an in-patient care? A designated place of care for the terminally ill?
- Is there a felt need for such a unit from other clinical units and clinical staff?
- How much understanding does other staff have about palliative care?
Promoting palliative care in the general hospital setting. This should be considered as an essential feature of the programme even before the establishment of the unit. However, it can be considered as a long-term part of continuing education. One may ask: what should be promoted? How to promote? Whom to promote?
What to promote: the unrelieved sufferings of patients, palliative care concepts, principles, benefits, outcome of symptom control, outcome of psychological care and spiritual care, holistic care, improved quality of life, fulfilling last wish
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How to promote: talks, seminar, case conference, newsletter, special activities like palliative care day unit, newspaper, radio broadcast
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Who should be informed about palliative care?: terminally ill patients and their family, hospital management, leaders of key referring units, doctors and nurses who in touch with dying patients, allied health workers, supporting staff, local community partners – including the service providers and advocates for local community
Collaboration with other services of hospital
It should be a fundamental understanding that different units within a hospital work as a team for the greatest benefit of the patient. The more collaborative the services, the greatest benefit it will bring to the patient. There is no place for territorialism or competition Collaboration means more than working together, it also includes:
Mutual understanding of the nature and scope of each service
Understanding the strengths and limitations of each unit
Congruence in philosophy of care
Spirit of cooperation
Established channels of communication at all levels
Practical issues to be addressed include:
What are the key areas of collaboration between the PC unit and other unit?
Who are the key persons responsible for the collaboration?
Does it require any formal management structure or meeting to promote collaboration or resolve problems?
System of referral and intake of patients need to be established.
What are the referral criteria? Criteria of referral need to be clearly written and the underlying principles promulgated. For all concerned to know and understand
Promoting appropriate referral is a major issue in this setting. Feedback on the referrals, pre-admission discussion with the referrers, or even on site screening are among the ways to improve mutual understanding.
Under - referral can be a problem in situations when accurate prediction of prognosis is required in certain health care systems, or when publicity has not been established.
Indiscriminate referral can be a problem especially in socialized health care system when disposal or discharge of patients gets priority over patients needs
How to handle waiting list and waiting time of referrals? Flexibility is needed in order to avoid providing a restrictive service to a few, and to deprive those with urgent needs of the palliative care service. Making use of other modalities of service provision should be considered, such as providing advice and support for the referrers while waiting, making use of other available beds in the same hospital, and setting priority in referral criteria as mentioned above
How to promote other units in supporting palliative care unit? e.g. palliative procedures like insertion of tubes/ stents in stenosis
The interface between a palliative care unit and other units
Patients being transferred from curative to palliative care often face the hardest psychological transition in goals from ‘life prolonging’ to ‘quality of life’. This process of transition is delicate, individualized. The transition can be facilitated by the skilfulness and gentleness of the referring team and the building up of trust towards the recipient team. From the management point of view, interfacing requires the participation of both parties. From the referring end, staff should be aware and define the palliative care needs of the patient and initiate referral at the appropriate time – not always an easy thing to do. The roles and benefits of palliative care should be promoted to patients. A liaison person, usually from the PC unit, will often facilitate the interfacing. The roles of palliative care can be explained to the patient in terms of:
Offering alternative approaches to aggressive therapies.
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Proficiency in symptom control
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Facilitation in communication
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Address and prioritize patient’s and family needs
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Discussion of ethical issues and life sustaining issues
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Address spiritual issues
Hospital setting offers the advantage of allowing face-to-face communication between referrers and receiving end, hence promotes interfacing. Moreover, while promoting early interface and collaborative care, patients are not deprived of options because of referring out of the original institution.
Setting up of an Inpatient palliative care unit /program
System of referral & Intake of patients should be established
Define care goals / care types of hospital-based palliative care unit
The types of advanced patient being admitted in in-patient unit have to be defined. Does it include non-malignancy terminal illness, or patients with HIV infection? The goals of care can be better defined by different “Care types”with specific treatment goals, criteria of discharge and optimal length of stay. Efficient use of beds is often an issue within hospital setting. Different care pathway can be implemented for different care types. As an example, four care types with different care goals are listed:
Acute palliative care: for rapid symptom control and intensive psychological care. The length of stay should be short as a few days to a week, and aim at discharge after acute problems are relieved.
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Extended palliative care: for smouldering type of cancer, patient with extreme weakness or high dependency, patient who requires complex nursing, e.g. paresis resulting from spinal cord compression, brain tumor, patient with tracheostomy. The goals of care should be provide support that could not be provided within community setting. Depend on resources of community, and the possibility of referring to other long term care facilities, the length of stay is difficult to predict.
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Rehabilitation: patient who requires physical therapy, occupational therapy, or speech therapy. Depend on the potential of rehabilitation; the length of stay should tailor to the goals of rehabilitation. Experience showed that often 2-3 weeks are often required.
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Terminal care: Some patients or their families prefer to die within an in-patient setting. The goals of care should be peaceful death and fulfilling last wish of patients and their families. The expected length of stay can be as short as a few days.
Decide size of unit and ward design:
An optimal size of a unit should be decided for:
Deciding a team size for optimal operation, e.g. rotation of duty, on call coverage
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Cost effectiveness. Too small a unit will be expensive
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Training opportunities for professionals
To decide optimal number of beds, the following factors should be considered:
Proportion of different care types – the bed number is closely related to the pool of patients in the community. No matter how sufficient and efficient is the community care; the proportion of in-patient beds to support the needs will increase as the community pool increases.
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Number of referrals patients per year
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Average length of stay
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Percentage of occupancy
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Proportion die in in-patient unit / the rate of home death in local community or culture
There is no ideal floor plan for ward design of an in-patient unit. In general, there are more restrictions for a hospital-based in-patient unit comparing to a freestanding hospice. It depends on hospital policy, funding, availability of space and culture. Nevertheless, the following principles should be guidance in designing a PC ward:
Space to promote privacy of patient
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Space to promote patient choice or autonomy, e.g. permissive personal habits like smoking
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Space to enhance family communication, facilitate them to stay
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Space to have leisure
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Space to have tranquility
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Space serves multidisciplinary purpose, e.g. on-site rehabilitation, conducting groups, etc
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Space to manage dangerous drugs like opioids
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Space to manage dying phase, last office and rituals after death
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Space to accommodate rituals of different religious beliefs
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Space for infection control
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Space for suicide precaution
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Space for staff to express emotions in private
Facilities for In-Patient care include:
- Easy accessibility incorporated in design or lift facilities
- Toilet and shower facilities –take into consideration transport of frail patients, especially those with cachexia or prone to fracture; spacious to accommodate chairs, trolleys, other special bathing devices
- Fall prevention aspect – foot lighting, low set beds
Medical equipment - oxygen, suction, syringe driver, resuscitation trolley (depends on unit policy), kit for emergency e.g. massive bleeding
Team structure:
The team structure is similar to that of freestanding hospice, but in general, there might be restrictions due to rules of institution. There will be a proportion of “mobile” staff, who may be accountable to their own departments. The key principles will be team approach, with clear clinical leadership, regular communicating meetings, and ways to bring consensus.
Decide policy of the unit:
DNR policy: is DNR an essential criterion for admission?
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Confidentiality
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Infection control
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Risk management: fall, suicidal precaution, prevention of injury on duty
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Rules and regulations like visiting hours, pets, children, overnight stay, food, smoking, religious rituals
Documentation and guideline:
Documentation on communication
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Documentation on decision in life sustaining treatment
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Patient’s confidentiality issues
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Patient’s choices and last wish
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Terminal care pathway : the last hours or days of life
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Guideline on dealing with emergency: e.g. catastrophic hemorrhage, suicide, asphyxia
Outcome assessment
- Audit of process and outcome e.g.
- Performance pledge – waiting time, symptom control
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