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Research

How effective is the preferred priorities of care document?

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This study explored district nurses’ experiences of using the PPC document

In this article…

  • An overview of the preferred priorities for care (PPC) document
  • District nurses’ experiences of using the PPC in practice
  • Developing a PPC protocol and guidelines for successful implementation of the document

Author

Tracy Reed is education facilitator for end of life care, NHS West Essex Community Health Services.

Abstract

Reed T (2011) How effective is the preferred priorities of care document? Nursing Times; 107: 18, early on-line publication.

Background Growing recognition that people nearing the end of life should have greater control over their care has increased the use of the preferred priorities for care (PPC) document.

Aim To explore district nurses’ experiences of using PPCs in practice.

Method A literature review and qualitative, unstructured interviews with 11 district nurses were carried out.

Results The study identified five key themes associated with the use of the PPC document: communication skills; hopelessness; empowerment; admission avoidance; and multiprofessional working.

Conclusion The PPC document was seen as a valuable end-of-life care tool by district nurses. Protocols and guidelines governing the use of the PPC, and the support required by health professionals using the document, would maximise its benefits. This could ensure a wider range of health professionals would use the document, rather than its use being confined to district nurses.

Keywords: Preferred priorities for care, End of life, District nurse

  • This article has been double-blind peer reviewed

5 key points

  1. The preferred priorities for care (PPC) document is used by patients and carers to record end of life choices
  2. Lack of communication skills training can leave some nurses ill-equipped to initiate complex conversations about dying
  3. The PPC tool can empower patients by providing the opportunity to make informed choices and ask questions
  4. The tool should be used by all members of the multidisciplinary team
  5. Protocols and guidelines on the use of PPC should be developed and implemented to ensure it is used effectively

This study was carried out to assess district nurses’ experiences of the preferred priorities for care (PPC) document, and how it can be used to help improve end-of-life care.

Research from the past 15 years was reviewed, based on six key phrases: preferred priorities for care; end-of-life care; district nurse experiences; care of the dying at home; district nurses; and palliative care in the community. Data sources included the Anglia Ruskin University and Royal College of Nursing libraries, Medline, Cinahl, Cochrane and the British Nursing Index.

District nurses are the main implementers of the PPC, yet a lot of the research focuses on the availability of palliative care in the community rather than the experiences of district nurses. Several studies have shown that patients with a PPC are more likely to receive the end-of-life care they want in the place they want (Henry and Fenner, 2007; Storey, 2007; Jones and Pooler, 2005; Pemberton et al, 2003).

Storey (2007) highlighted the challenges district nurses face in using PPC documents. A pilot study suggested some felt “vulnerable at being faced with something in print they do automatically as part of their routine care”. The study also suggested some district nurses avoided exploring the issues raised by the PPC document and chose not to complete it (Storey, 2007).

The literature review also identified a lack of nurse training in communication skills and palliative care.

Caring for patients at the end of life can be extremely stressful for nurses (Wilkinson et al, 2008), yet end-of-life care is not a mandatory part of pre-registration nurse training or post-registration district nurse training programmes. This can leave some nurses ill equipped to initiate and manage complex conversations about end-of-life care with patients and their families (Henry and Fenner, 2007; Lowson, 2007; Chapple et al, 2005).

Taylor (2007) argued a lack of training in communication affected how nurses worked: “Communication appears to have low priority within training, so why would it have high priority within care?’”

Some nurses’ lack of experience and knowledge made them reluctant to use the PPC tool (Henry and Fenner, 2007; McKenzie et al, 2007; Storey, 2007; Newton, 2006).

Method

This study took a descriptive, phenomenological approach.

After ethical approval was secured, district nurses at West Essex Primary Care Trust were invited to participate. They had to have completed two PPC documents in the community and agree to be interviewed to take part. Eleven district nurses were included in the study (Table 1).

In-depth interviews were carried out with all the nurses to determine their experiences of using the PPC document. The interviews were transcribed, and the data broken down into categories and themes.

Although the sample was small size, limiting the study participants to district nurses who had experience of using the PPC document produced in-depth data.

Results

Five major themes emerged from the interviews (Fig 1). These were: communication skills; hopelessness; empowerment; admission avoidance; and multiprofessional working.

Communication skills

Study participants said the PPC document enabled in-depth conversations. The more they used the document, the more confident district nurses felt in starting difficult conversations:

“The document is quite straightforward and is a good tool for opening up discussions with families” (P1).

“I have 30 years’ experience but these subjects can be quite difficult to raise for junior staff. The PPC is helpful as it gives them something to work with” (P9).

The nurses acknowledged that using the PPC document was initially challenging, but said that experience gave them confidence. Personal experiences and reflection through peer support also helped them to achieve the confidence required to start and maintain conversations around end-of-life care:

“It’s difficult for nurses with not as much experience. I think that, as you form your own personal experiences, you know how to deal with situations” (P3).

“Get a good relationship going with your patient, then gently introduce the document. Showing empathy will help” (P4).

“You need practice, and time to share with the patient and your colleagues. This is what we do in our team and it helps our confidence” (P10).

Active listening was a key skill required to use the PPC effectively. The nurses felt they needed time to get to know patients so they could listen to them and build a rapport.

Some participants felt they would like to take part in advanced communication skills training. Others expressed dissatisfaction at nurse training, saying it did not prepare them for the types of conversations they were experiencing. With no formal guidelines to consult for clarification, they relied on peer support.

Hopelessness

Participants recognised that lack of confidence in using the PPC prevented some members of the team from using it.

Some staff felt the PPC document was seen as a “death” document for patients, and that talking to families about their preferred priorities for end-of-life care could take away any hope and goals they had left. To prevent feelings of hopelessness, participants used empathy to build a rapport with patients and their relatives so they felt able to discuss priorities for care with the nurse:

“It is taking away hope for some people. Different people accept things in different ways, and when you start discussing the PPC you can still feel you’re taking away hope” (P3).

“I find it quite difficult to introduce [the PPC] because sometimes it feels like you are taking away people’s hopes when they are striving to survive. We shy away from using it as feel it may upset people” (P4).

“I think you have to be very empathetic using the PPC because a lot of people with a cancer diagnosis are not well and you get a lot of people in denial. In our team, we tend to find it is nurses who get asked to take the PPC as they are more able to relate on an empathetic level. If you home in on empathetic skills you won’t have a problem” (P2).

Empowerment

Study participants said the PPC empowered both patients and professionals by providing the opportunity to make informed choices and ask questions. They highlighted enabling people to die in their preferred place as their primary concern, and said the PPC could reduce unnecessary hospital admissions and treatments:

“She [the patient] was not being moved from her home as she did not, under any circumstances, want to go to hospital. She taped the PPC on the wall above her bed and, when anyone came in, she said ‘I am staying here’. That gave her a sense of security and inner peace, and helped her as we all listened and kept her at home” (P7).

“I do think that it definitely stops them [patients] going into hospital” (P10).

Admission avoidance

People in care homes with a PPC document are more likely to avoid unnecessary hospital admission as professionals, care home staff and families are less likely to panic if a PPC had been completed. The participants said family members and care staff felt empowered to challenge decisions about transferring residents to hospital:

“A lot of the homes around here want all the patients to have a PPC as it empowers them” (P2).

“Because he [the patient] had filled out the document, he felt they took notice of him. Nobody panicked and called an ambulance, and he didn’t end up in A&E. That gave him and the care staff peace of mind. People do not want to die in hospital” (P2).

Multidisciplinary working

The interviews also revealed the nurses saw PPCs as an important boost to multidisciplinary working. Patient care in the community often involves many different services, with various professionals involved. The PPC helps promote discussion in team meetings and improve communication, often as a result of knowing what patients want:

“It makes things so much easier for healthcare professionals to know what patients want. I think the document can be used to promote collaborative working, not only with the patient themselves and the nurses but also with other teams. This document is here to stay” (P7).

The district nurses liked the fact the document stored contact details for every member of the multidisciplinary team, including hospice staff, chaplain, neighbours and volunteers.

However, the interviews also identified disappointment and concern that other health professionals saw completing the document solely as the district nurse’s job. Several participants suggested health professionals who already had relationships with patients may be better placed to introduce the PPC. The district nurses felt the PPC should be introduced by the professional most involved in providing care, which would be promoted by guidelines on using the document.

“If somebody has a good relationship with a patient, such as a patient with multiple sclerosis having a long-term relationship with a physiotherapist, I don’t know why the document can’t be employed by that discipline to elicit the patient’s wishes. It does not have to be us [district nurses], although, in my experience, it is us
they ask to complete it. Perhaps we need guidelines” (P7).

One participant felt introducing the PPC was a way to involve the district nurse early in a patient’s progression along the end-of-life care pathway.

As the health professionals who introduce the PCC document and help patients complete it, district nurses felt under pressure to deliver its contents. The need to explain that some choices may not be possible was identified as an issue.

Discussion

The study results showed the PPC document was largely used as a communication tool. Communication is essential in end-of-life care to understand patients’ beliefs and choices, and the study showed a firm belief that, if a patient makes a choice, professionals have a duty to take notice.

Effective communication requires a balance of listening, speaking and understanding (Osbourne, 2008). The study findings echoed the literature, suggesting nurse training in communication skills did not adequately prepare nurses for practice.

A second important issue identified by the study is who should take responsibility for introducing the PPC document. District nurses said other professionals who had been involved in a patient’s care for longer, such as the GP, may be better placed to raise the issue and complete it.

Both the study and the literature suggested the PPC was sometimes introduced too late, or when individuals were too vulnerable to discuss their choices (Storey, 2007). This could be attributed to the document’s former title and role – preferred place of care rather than priorities for care. This meant the document and process focused on where the patient wished to die, something that could be left to relatively late in the disease progression.

The district nurses felt the document enabled them to give something back to patients and their relatives. Although completing a PPC can be time consuming, the district nurses were positive about the time spent with patients doing this which was seen as empowering for both professionals and patients. Participants also said the PPC could be used as a tool to focus discussion between themselves and the multidisciplinary team.

The PPC is about more than just completing a document – it is about mutual trust, dignity and respect. It provides a “wish list” for patients and lays the groundwork for advance care planning. The district nurses saw this as a major benefit as it gave patients and relatives an insight into what to expect.

However, the findings suggested that, without reflection, peer support and clear guidelines, the tool would not be embedded into practice. The study highlighted that some nurses shied away from using the document through lack of experience and knowledge. However, they said effective use of the tool improved with experience, and the PPC process improved their communication skills.

Developing a PPC protocol

Clear guidelines and protocols on how and when to introduce a PPC document, and how to complete it, are needed. This would also help health professionals to understand the document and provide guidance on where to obtain advice, support, and training.

All members of the multidisciplinary team need to be educated in how to use the document and identify their needs, especially around communication skills. A multiprofessional group formed locally to support staff and develop the PPC protocol is essential.

The protocol should show when and how a PPC document should be implemented, who by and who to contact if there are problems or further support and guidance is required. Implementing the protocol would require all members of the team to look at changing practice, and improving communication skills.

The protocol should also take account of patients who prefer not to have their wishes and preferences formally recorded on a PPC; nurses can still engage in advance care planning with patients through less structured conversations.

This change in practice is in line with the aims of the National End of Life Care Programme (www.endoflifecareforadults.nhs.uk) and quality markers set out by the Department of Health (DH, 2009). It will ensure everyone can access and receive high-quality end-of-life care from confident and skilled professionals in all settings.

Conclusion

The district nurses who took part in this study found the PPC to be an effective communication tool. While it could lead to difficult conversations, it provided an opportunity to build relationships and allowed patients to voice their expectations and choices for care. District nurses saw PPC as a tool to empower patients, families and professionals in improving end-of-life care.

However, the study does raise questions about whether other professionals should introduce the document, especially as district nurses typically begin working with patients at a relatively late stage in their journey along the end-of-life care pathway. Patients are often treated in the community from diagnosis and by a range of professionals, yet completing a PPC is often seen as the sole responsibility of district nurses.

A strong relationship with the patient is vital when introducing a PPC, and this must be governed by guidance and reflective support to ensure successful implementation across the board.

Challenges associated with end-of-life care

  • Health and social care staff often find it difficult to initiate discussions about end-of-life care. This makes it difficult to determine people’s needs and preferences for care and to plan accordingly.
  • People frequently need care from several services, yet care is often poorly coordinated.
  • People approaching the end of life need around-the-clock access to care and support. Even when services are available, they do not always meet people’s needs. This may be because health and social care professionals have not received adequate training.
  • When people enter the dying phase, health and social care professionals may not know what to do or have the resources to ensure maximum comfort for the patient and support for carers.
  • Source: Department of Health: 2008
  • 1 Comment

Readers' comments (1)

  • I recently wrote to the PPC implementors with the problem I had with this document, as my experience with introducing it to my patients was difficult, because as most patients prefer to die at home, this was not always possible. In fact hardly ever possible as the resources are hardly ever available, particuarly at night time. Despite engaging with all multidisciplinary teams, it was night time that was most difficult to cover. So giving a patient a choice to die at home is giving false expectations. I was given all sorts of audit figures and statistics but this does not help when you are with a patient who is dying and you are unable to facilitate their wishes.

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