Derek Doyle, OBE, MD
If the new palliative care service is to be part of a larger health care facility (hospital, medical centre, or community service) its management structure will be dictated by the existing system. It then becomes essential that the palliative care service has at its head, someone with both an understanding of, and experience in, palliative care.
A free-standing hospice or an independent unit will need to have a Board of Directors/Trustees, who will be legally responsible for the affairs and operation of the service. If the service is within a hospital, it is highly likely that there is already a Board of Directors/Trustees in place. This section refers to a Board of Directors /Trustees of a free-standing palliative care unite or hospice.
The legal responsibilities of such a Board will be laid down in the statute books of the country where the service is based. They are legally binding. Membership is laid down by its Articles of Memorandum and Constitution.
The chairperson is usually someone with a track record of such leadership, coming from any of the learned professions or commerce or academia. It is useful if the members can represent medicine, nursing, law, local or national government, the public, the media and the church. Sitting in on its meetings but not serving as trustees or governors or permitted to vote, can be the CEO (Chief Executive Officer) and the nursing, medical and administrative directors.
A professional advisory committee, non-executive but immensely important and influential group, reporting directly to the Directors/Trustees. Much of the efficiency and credibility of the unit will flow from this committee and its influence and guidance. Its membership, 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.
This is one of the most useful committees yet seldom set up by those 'getting started'. Usually with 8-12 members, they should present general practice, hospital medicine, university, hospital and community nursing, social work, local clergy, professionals allied to medicine and specialist palliative medicine/care. Initially most members will be invited by the founders of the service because of their known interest in palliative care or their standing in their profession or locality.
Such a committee usually meets quarterly for the first few years of a new service then twice yearly when it is well established. The period that members serve is decided by them in consultation with trustees. The selection of a chairperson is also usually left to the trustees.
The committee usually has no executive powers but is, as its name implies, an advisory body. It advises at the request of the clinicians of the new service and the Trustees/Governors on matters such as staffing, research, records, service provision and relations with other clinical services – anything that relates to the care programme of the new service. Some palliative care services have subcommittees of the Professional Advisory Committee advising on pastoral care and another advising on education.
The following is an example of an organizational structure. The structure that works for the service depends on the level of resources, the needs, the existing organizational structure and legal or institutional norms.
The success of any team rests with the personality, the interpersonal skills, and the management skills of the Chief Executive Officer (CEO)/Executive Director.
Provided there is a Professional Advisory Committee and the Board of Directors / 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.
If the service is 'free-standing' or 'independent' then it is important to choose the most appropriate and efficient management structure.
It is recommendable to do a strategic plan for five years. It provides a sense of direction and outlines measurable goals. Strategic planning is a tool that is useful for guiding day-to-day decisions and for evaluating progress and changing approaches when moving forward. In addition, it helps to set priorities, focus energy and resources, strengthen operations, ensure that employees and other stakeholders are working toward common goals.
Building a new palliative care service requires strong leadership to plan, develop, implement, and to continue, evolve and grow.
Being a good leader is not something everyone can do, but you can learn it! Every effective leader needs to possess and/or work towards their goals and vision. Leadership means creating and planning, securing resources, and looking out for and improving errors. Leadership is about inspiring and motivating people to work together and cooperate with themselves and in some cases, other teams, to achieve the common goal.
Each manager, as in any company or organisation, will be responsible for the support of staff under their control and direction. Such support may be unobtrusive but nevertheless must be tailored to the different needs of each member of staff, and details of major issues and formal meetings recorded.
Staff morale in any palliative care service is largely dependent on:
In addition, it is useful for every member of staff, no matter how small the staff, to be provided with an employee handbook. In it will be given information about the aims of the service, its staffing, its management structure, its committees, uniforms, discipline and appeal procedure, lines of responsibility and communication, vacations, holidays, sick leave, family leave, ethical guidelines etc.
Such a handbook is as much for the administrators/managers and trustees as for clinical staff members, enabling them all to feel part of this new and exciting venture. It should be so worded that readers feel welcome and excited to be part of something exciting.
Very importantly a consultation service allows for teaching and support for others in healthcare (physicians, nurses, therapists) and can influence their care of other patients under their care but not referred for advice from the HPCT ('ripple' effect).
From the start of a new service each member of staff must be given the opportunity to develop their skills whether they are in management, teaching, or bedside care. Modest courses might be held in the unit. Others may be day-release study days or residential courses, ranging from modest updates to advanced training leading to higher qualifications. Financial budgeting is obviously essential. Few aspects of staff support yield so many benefits as professional betterment.
Ideally, but not often done, is for Directors /Trustees to have occasional (say annual) study days when they are brought up to date with the working of the service and developments in palliative care generally, hear talks by staff members, and collaborating colleagues in local hospitals.
It is extremely easy for Trustees and members of staff to become islands, less and less aware of the outside world, ignorant about palliative care nationwide and worldwide. Every effort must be made to prevent this happening.
The surprising answer is 'probably not'. People working in palliative care for the first time expect it to be stressful because of the number of deaths, the level of grief and anger but research has shown that most stress is related to the obsessive, high expectations, critical personalities of the staff members. A short session chaired by a psychologist or psychiatrist, held every two weeks in the first year of a new unit, is usually all that is needed.
The realistic aim of a palliative care service is not to produce perfect care but to offer care better than people have experienced before, care that is always under review and gets better all the time.
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 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.
The Lancet Commission on Palliative Care and Pain Relief designed a cost-effective, essential package of palliative care medicines, basic equipment, and human resources, which is das minimum requirement for a health system, though resource-constrained, should make universally accessible for alleviating much of avoidable suffering (12). Of course, this list can be adapted and expanded according to the local situation.
Box 3: Essential Package of palliative care and pain relief
Human resources (varies by referral, provincial or district hospital, community health center or home)
What might be regarded as essential in one country might not even be used or available in another. The more sophisticated and affluent a country the more patients and their relatives will expect 'special' equipment. In other cultures, they will improvise and manage to make a patient feel comfortable and safe in conditions that might seem Spartan and inadequate in the West.