How to get ahead in ... palliative care

Palliative care nurses can come from any field but they tend to have experience in cancer care. Photograph: Getty Images

Elaine Stevens knew just 18 months into her nursing career that she wanted to specialise in palliative care. Her decision, 30 years ago, made her one of the first specialist nurses of her kind. Her peers were attracted to more glamorous nursing careers, such as emergency or acute care.

Stevens, who is now a nurse academic training the next generation of palliative care nurses, says she was drawn to the role because of its focus on quality of care. She says: "Your role is still about good care, but it's directed at the quality of life as opposed to the quantity of life. That is where the satisfaction comes in."

According to Stevens, who is chair of the Independent Association of Nurses in Palliative Care, it is uncommon for newly qualified nurses to be attracted to the role. Traditionally, the specialism appeals to more experienced nurses who may be disillusioned with "high tech care" and want to get back in touch with the "art of nursing".

"I think it's about realising that there may be something better you can offer people if high-tech care isn't the answer," she says. "I think what tends to happen is that nurses migrate towards palliative care as time goes on and they see the opportunity [it offers]."

It is also common for palliative care nurses to come from a cancer care background, according to Ruth Bradley, director of care at St Joseph's Hospice in Hackney. "They can come from any field, but predominately they tend to have a lot of experience in cancer care. They usually have some palliative care experience and want to work in end of life care."

St Joseph's has a team of 15 clinical nurse specialists – including three team leaders – who cover three east London boroughs. The team, which is recruiting for a new clinical nurse specialist, shares responsibility for the hospices' 350 patients, the majority of whom are living in the community.

"At times, we can be a more central focus of the care and at other times we may be more peripheral, but if symptoms deteriorate and life care needs change, we increase our input," says Bradley. "Most people want to stay at home, but things can change if people deteriorate or the family finds things difficult."

Compassion and empathy are the obvious personal characteristics expected from a palliative care nurse, but there are others which are just as important: "You have to have a good handle on your own mortality and be comfortable with your own mortality. You also have to have good communication skills – being able to talk to people about some very distressing situations," says Stevens.

The specialist nurses also have to have "a regard for quality", according to Bradley: "They need to believe in justice, equal access to service and be able to reach out to people from diverse backgrounds and be culturally sensitive."

A "real regard for holistic care" is also key, she says. It requires a mix of clinical skill but also the ability to provide psychological, cultural and spiritual care, not only to the patient but to their family and friends. "Palliative care enables you to assess the whole person; it requires you to manage a deterioration in symptoms, which requires great skill. It's more than the physical symptoms – it's about the psychological toil and the social impact. It draws on so many skills. You are enabling quality of care in very difficult circumstances. You feel you can make a difference, and that is where the satisfaction comes in."

The chance to make a significant difference to a family dealing with death is what drives palliative care nurse Roxanne Vieira-Moreno at St Joseph's. She says: "I am looking after a young woman of 33 at the moment who has only weeks to live. We are writing letters to her sons who are only young. Her sister will give them to the children when they are 18. I am part of this thing for this mother who is leaving this gift for her sons. It's very hard and I wouldn't say it's an easy thing to do but that is where I get my satisfaction."

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Liverpool care pathway review shows challenges in palliative care

The Liverpool care pathway has been encouraged to avoid unnecessary interventions in the care of people who are dying. Photograph: Voisin/Phanie/Rex Features

The law of unintended consequences can be insidious. The Liverpool care pathway (LCP) has been encouraged over the last decade with the express objective of avoiding unnecessary interventions in the care of people who are clearly dying, and ensuring they achieve a good death. However, it should now be phased out and replaced by an individual end-of-life care plan, according to the findings of the independent review led by Lady Julia Neuberger.

Almost a decade ago, the House of Commons health select committee conducted an inquiry into palliative care and while it supported the take up of tools such as the Gold Standards Framework and the LCP, the committee cautioned "that there are significant challenges in raising the skills and awareness of all healthcare staff in palliative care." The findings of the independent review provide testimony to the continued failures of training around the LCP, with the result that far from providing a model of good practice in palliative care, the LCP too often leads to poor practice – "uncaring, rushed and ignorant".

This is a shocking indictment of the care of people in their final days of life, often very elderly people whose relatives were left with the impression that their life was no longer valued. Withholding food and drink has caused the greatest concern and distress with staff apparently on occasion refusing to allow liquids for people who were thirsty and dehydrated. The review is in no doubt that the failure to provide oral hydration and nutrition "when still possible and desired should be regarded as professional misconduct."

Poor communication with patients and relatives is at the root of many of the failures and criticisms of the LCP, and evidence to the review found significant numbers did not feel involved in discussions about the care plan, or were not given the chance to be involved. People are sometimes not told that a loved one is dying or what they can expect to happen.

Inappropriate use of opiate pain killers and tranquillisers was also the focus of criticism, particularly when this led to a patient becoming drowsy, and relatives left wondering if the use of drugs had hastened death.

The review has recommended that the LCP should be phased out, and this has been accepted by health minister Norman Lamb. However, it is vital not to abandon the core principles which underpin the model. The failure of the LCP has been in its application and poor support; the review found that when used appropriately "patients die a peaceful and dignified death", but that implementation is sometimes associated with poor care.

The clear thinking and pithy recommendations of this review will be welcomed, so too will the speed of response from government. It is clear that when the LCP is operated "by well trained, well-resourced and sensitive clinical teams, it works well." The reverse is also true and the need for new guidance and training for all staff is evident. Nonetheless, existing guidance is not being adequately followed or understood and major cultural change is needed at all levels of health and care to prioritise good quality end-of-life care. The review identifies the need for a strategic approach from NHS England down to clinical commissioning groups, and with the Care Quality Commission taking a lead in reviewing how well dying patients are treated.

It is distressing that what began as a model to raise the quality of care for the dying has too often been reduced to a tick box procedure which takes insufficient account of individual needs or wishes, and where vital care and compassion are absent. It is a tragedy however for families and carers who have lost relatives who have been cared for under the LCP, and for whom there will remain considerable distress and unanswered questions. Did their relative die a hastened death? Did they suffer unnecessarily because of the interpretation of the LCP? And would they actually have been able to live longer and die better without the involvement of the LCP?

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