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

Derek Doyle, OBE, MD

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Good communications lie at the heart of palliative care and every palliative care service. Its importance cannot be exaggerated. Many new palliative care services are judged as much by the quality of communication as by the clinical care.

It is not only patients and relatives with whom palliative care workers must communicate. They must be skilled in explaining to the public, the media and their politicians what palliative care is, how it is practised. At this time when so many misunderstandings surround it, they must be able to explain that palliative care is not either euthanasia or physician-assisted suicide. On the quality of these communication skills will depend much of the success and effectiveness of the service and how much it is supported and valued.

Communicating with patients

Good communication skills are pre-requisites for palliative care, especially between the members of the palliative care team and their patients, and inside the team itself. If a patient or relative has not understood what a doctor or nurse has said, or not been encouraged to ask questions or feels he/ she is not listened to, their suffering will only increase. Few professionals have been taught to listen as carefully as they speak.

Such skills should be amongst the attributes to be looked for an interview. During the whole time of employment in any palliative care service managers must ensure that every opportunity is taken to further develop these skills.

Important and potentially difficult discussions are frequently necessary with palliative care patients who have active, progressive, far-advanced disease, regarding:

Decisions must be individualised for each patient and should be made in discussion with the patient and family. The following guide is to help you plan for and hold such discussions.

Before the Discussion

Ask yourself these questions:

Would you be surprised if this patient died of their disease within 6 months?

Bear in mind that even doctors with long experience tend to over-estimate prognosis.

This may provide a better guide for decision-making, as attempting to prognosticate may be difficult and inaccurate. Alternatively, assess how much the patient’s condition has deteriorated in the last month or six weeks, using observations by the team and objective measures such as x-rays and biochemistry. Observations by close relatives often help.

What specific therapies are available to treat the underlying disease?

About the Patient and Family

The Discussion

Appropriate setting

Introduce the discussion:

Find out what they understand:

Find out what they expect:

Provide medical information, if necessary

Discuss realistic possibilities in the context of their view of the present and future:

Discussing prognoses

Discussing admission to palliative care units/services

Discussing appropriate medical care

Discussing Do-not-resuscitate’ orders (DNR)

Respond sympathetically to emotional reactions:

No more will be said here about this important feature of palliative care because it is dealt with in all major books on palliative care. It should always remain at the centre of attention, never being assumed to be better than it really is, hence regular audit of communications is essential.

As explained later in this section it is useful to produce leaflets explaining what the palliative care service is for, how it operates and is funded, how to recognise members of staff, how to contact it for help etc.

Communicating with (health care) professionals

Communications between the members of the palliative care team are crucially important but not an issue for those just 'getting started'. Here we look at communications between team members and their colleagues in the community and in hospitals.

Evidence suggests that such communications are often far from satisfactory. This may be because most doctors and nurses cannot explain things simply, or because they do not know what others want/need to know, or because they are poor listeners. There is also evidence that most doctors and nurses are aware how badly their colleagues communicate but think that they themselves are good communicators.

Doctor – Patient and family

In palliative care each doctor needs to know

Doctor – Nurse Communication

The content should be the same as above with the addition of

Communicating with relatives and friends of patients

It goes without saying that having obtained the permission of the patient to do so, all the information they want is conveyed to close relatives and, in the absence of relatives, close friends. What is not permissible, no matter how vigorously they ask for it, is to tell relatives or friends information that they do not need, that they might use inappropriately or that has not been conveyed to the patient. Well-meant offers by relatives or friends that they will break bad news or explain the situation to the terminally ill patient should usually be declined. The responsibility for such communications rests on the professionals.

Research shows that most relatives feel they were not kept up to date on the patient’s condition, treatment, future, and understanding of his/her condition. They further report that they, the relatives, were not sufficiently told of help available to them – financial, practical, and emotional. It is helpful:

What every relative or close friend must have is a Visitors’ Handbook (or whatever it is decided to call it). Its contents will include:

Communicating with the public

Many suggestions have already been made in this section to aid this. The most effective means are:

Explanatory leaflets about the service are always valuable

Two types are needed:

A general-purpose leaflet explaining what the service offers, who it is for, whether any charges are made, how referrals are made, how it is staffed and where further detailed information can be obtained. It is designed to hand out to the media, to have in doctors’ and lawyers’ waiting rooms, to give to enquiring patients and relatives and to assist in fund-raising without being a 'begging' letter.

A patient-specific leaflet explaining the principles of palliative care, how it is offered in the service, how to identify members of staff, where to seek advice and help etc. Copies can be given to all patients admitted to the service whether in a unit or at home, displayed at the entrance or reception, and be carried by all staff and volunteers likely to be asked about the palliative care service.

Communicating with the press

When a palliative care services is started, particularly by a charity, there is often considerable media interest. Reporters from local papers want to film facilities and interview staff members and TV crews are soon there looking for 'interest stories'.

This can be stressful particularly for people unfamiliar with being interviewed, and even worse, when they ask to to/expect to interview and even photograph patients. Many who have started palliative care services report that one of the most stressful, distressing features of the early days of the work was the interest shown by the media, the benefits of which were often not obvious to any except the reporters.

However, experience shows that the media can and does do much good. If the senior staff of the service co-operate with them, they can be of enormous help, raising awareness of what palliative care can offer, what financial and other help the service needs and how the local community can assist it. Finally, the media can help to highlight ethical issues involved in palliative care and dispel any notion that it is a form of euthanasia – a very commonly held view.

Communication with the media

Ways to facilitate communication and co-operation with the media:

Appoint an appropriately qualified and experienced senior member of staff or volunteer to be the 'press officer', to answer questions, plan for interviews, shield the service from undue media pressures. The media always appreciate having such a 'contact person'.

Ensure that each newspaper and TV station is invited to all major events – fund raising, new buildings, special announcements – and made to feel welcome and wanted. The more often the service is mentioned in the media the higher will be its profile, and hopefully the better will be its voluntary income and recruitment of staff and volunteers.

Be prepared to issue press releases on all such occasions or when the service has a noteworthy event or piece of news - new senior staff appointments, a member of staff receiving an award or honour, breaking records of patients cared for, achieving a fund-raising target. Such a release should always be restricted to one side only of A4 paper, double-spaced, succinct and jargon-free. It might also have an embargo date and time which the media always respect and honour, never releasing the information prior to that time.

Restriction on media access

In advance of any approach from the press, radio or TV the Trustees/Governors or the directors/CEO acting on their behalf must make a policy decision about patient privacy and how it is to be respected.

Even the best journalists and interviewers will press to be able to interviews patients or, as a second best, their relatives. They will use persuasive arguments to show how telling it would be for a patient to describe how they have been made welcome, made more comfortable, or in whatever way they choose to describe what a wonderful place it is.

In terms of patient autonomy, it is, of course, the patient who must decide whether they wish to be interviewed or filmed but few appreciate how long such interviews usually are, how exhausting, how upsetting to loving relatives, and how many thousands of people are, in a sense, brought into the intimacy of their rooms. Paternalistic as some might describe it, most palliative care units discourage patients from agreeing to meet the press.

Finally, when considering communication with the media, those not experienced in working with them usually forget that they:

Communicating with politicians

Politicians need to know about palliative care services because:

Most politicians, certainly in regions or countries where palliative care is not yet established, know nothing about it. Evidence suggests that they want to learn about palliative care, many of them becoming deeply committed to it in one way or another.

Ways in which politicians can learn about palliative care

Local politicians (as distinct from national ones in government/parliament/ assembly) like to host occasional events in local government offices/chambers. The expenses are met by the palliative care service but politicians like the opportunity to have a profile, show off where they work, and demonstrate their commitment to local enterprise.

Undoubtedly the best way to help, and win the support of, national politician and leaders is through an All-Party Parliamentary Palliative Care Group. (Inevitably its name will differ from country to country. Some refer to it as The Cross Party Parliamentary Palliative Care Group). Such groups now operate in several countries.

The crucial thing is that the group is non- political.

It needs a Member of Parliament (MP), Congressman, Senator or Member of a National Assembly to start it in cooperation with the palliative care services of the country (preferably a national association or federation of services). They then send letters to each MP asking if they would be interested in learning more about palliative care, if they would be willing to attend a meeting in a parliamentary building, lasting no longer than 1 hour every 3 months, and if they would be willing to receive a small information pack on each occasion.

At each meeting they have a 10 minute (or less) talk from a palliative care expert on topics as diverse as how existing services are coping, opioid availability, opioid myths and misunderstandings, palliative care in neighbouring and other countries, palliative care for minority and disadvantaged groups, education, and training in palliative care in schools and university, ethical issues. This is followed by questions to the speaker, then questions raised by their work or constituents, and finally discussion how best they can encourage and facilitate the development of palliative care in their country.

The 'information pack' contains details of new services, copies of any information or scientific papers they have requested and a small piece on palliative care internationally. Politicians like to feel they are comparing well with other countries.

A National Palliative Care Resource Centre/Officer

The public, the press and most politicians like to get most of the authoritative information they need from a central resource rather than contacting numerous units, services and agencies.

It therefore becomes a matter of urgency that when several palliative care services operate in a country or state such a resource is established, provided with all the statistics and information available. Whether that is then published in hardcopy or on a website or made available in other formats is a policy matter for the operating group or association.

Evidence coming from several countries suggests that support from public, press and politicians is greatly enhanced when there is a representative/co-ordinating body.

Auditing Communications

Every means possible must be used to check whether the quality of communications is as good as possible. Some form of audit should be built into the system from the start of the service as follows:

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