VOL: 98, ISSUE: 06, PAGE NO: 35
Bridget Moss, BA, RGN, DipHE, is clinical nurse specialist, palliative care;Diana Howard, MSc, BA, RGN, RMN, is palliative care team leader;Heather Wright, RGN, DipHE, is Macmillan clinical nurse specialist, all at St Mary's Hospital, PaddingtonPalliative care has been defined as the care of patients with advanced, progressive disease for whom the focus is quality of life (World Health Organization, 1990). It is sometimes complex, often challenging and always demanding, and although it is often assumed to be synonymous with hospice care, many patients in acute hospitals require palliative services.
Palliative care has been defined as the care of patients with advanced, progressive disease for whom the focus is quality of life (World Health Organization, 1990). It is sometimes complex, often challenging and always demanding, and although it is often assumed to be synonymous with hospice care, many patients in acute hospitals require palliative services.
At St Mary's Hospital in Paddington, London, the palliative care team works alongside health care professionals in an advisory, educative and supportive capacity. All three situations described in the case studies are complex and diverse, but they have common themes that illustrate the role of the palliative care nurse specialist.
A key requirement in all cases was a holistic approach to care: being able to see the whole picture to identify priorities. The palliative care team often needs to ask challenging questions to facilitate decision-making and care planning. For the patients in the case studies, the main questions were:
- Was surgery appropriate for Gail Metcalf (Case study 1) and, in view of her advanced disease and rapid deterioration, in her best interests?
- What was the best choice of care for Hannah Meeds (Case study 2) and how could the health care team support her in this decision?
- In view of the complexity of pain management, was it possible to care for Louise Rickett (Case study 3) at home?
In acute settings the speed of decision-making is crucial, and this was especially so for Ms Metcalf. Our role involved challenging the management plan for surgery and drawing the urology team's attention to the deterioration in her condition. It was essential to speed up decision-making at a senior level, as junior members of staff were reluctant to alter the management plan.
Ms Metcalf's mental state made it difficult to assess her pain. However, she was deteriorating daily so decisions could not wait until the next consultant ward round and the greatest challenge was getting our advice implemented promptly.
Pain management was important for all three patients. Ms Meeds had nerve involvement from her disease and was experiencing intense pain in both arms and shoulders. This was complicated by long-standing musculoskeletal problems. With careful adjustment, the pain was controlled with morphine and anti-inflammatory medication. Other measures that made a big difference centred on her position and comfort in bed.
A number of drugs were contraindicated for Ms Rickett, so the pain was difficult to control and the choices were limited. Optimum control was eventually achieved with a mixture of oral and epidural analgesia, providing some relief and mobility. The key issue was bringing together the different teams - renal, haematology, acute pain and palliative care - to decide on management. Our role was to facilitate and represent the patient's view, as she desperately wanted to go home.
Helping patients adapt to change
Exploring the patient's and family's wishes as far as possible, and incorporating these in decisions and care planning, is essential. Helping staff to support patients in coping with change can be a challenge in the acute setting. Ms Rickett had worked internationally before her illness, and although she was disabled Ms Meeds had coped with daily tasks and remained independent. Both their lives had been transformed and they depended on nursing care for every activity of daily living.
Ms Meeds became deeply depressed, increasingly passive and withdrawn during her hospital stay. She found it particularly difficult to come to terms with the fast pace of a surgical ward that was caring for patients who were relatively well and often went home. The key skills required in caring for her were being able to distinguish between depression and disease progression, acknowledging the difficulties this created for all staff and working together as a team.
Keeping relatives informed
Providing information sensitively and appropriately, and offering support to patients and their families, is intrinsic to the palliative care role. Ms Rickett's family lived abroad, but during an acute episode it was agreed that they should come sooner rather than later. Reaching this decision involved discussing death and dying and finding out what she wanted. At times these discussions were poignant.
Ms Meeds and her family found it difficult to accept the news of her advancing disease and it was necessary to answer their questions and clarify their understanding, which involved gently repeating the bad news that her disease was widespread. This was a key discussion, with all family members at the bedside. Unfortunately, it took place in the middle of a busy ward and therefore without privacy.
Key conversations with Ms Metcalf's family had to take place in a cluttered treatment room as it was the only space available. The speed of her deterioration meant it was vital to keep the family accurately and sensitively informed, reiterating and translating medical information on the diagnosis and prognosis, and exploring the option of terminal care at home.
Negotiating future care
The consideration of future care and placement began early in our involvement with all three patients and their families. Ms Rickett was desperate to go home, but the management of her epidural had to be considered. Many health professionals in the hospital and the community thought this would not be safe outside the hospital setting, a problem that was complicated by the fact that she required dialysis three times a week and was unable to move without considerable pain.
After weeks of debate on the benefits of continuing dialysis and a detailed assessment of her needs at home, Ms Rickett went home, returning for dialysis three times a week and having the epidural changed while in hospital. This was not ideal but it did allow her to go home and have some kind of normality in her life.
Placement decisions were also important for Ms Meeds, particularly as she felt she was receiving good care but in the wrong place. She needed full assistance with all activities and was expected to live for months rather than weeks. After accepting that her disability would continue and eventually get worse, she decided to go to a nursing home near her family. Once funding had been approved, the family and hospital discharge team worked together to find a suitable place.
Decisions on Ms Metcalf's care were led by the family's wish for a quieter environment with a single room and expert symptom control. She was being nursed on an open ward, which she, her family and other patients found distressing as she was noisy at times. The local hospice was the best option, but she died within 36 hours of referral to the palliative care team, before transfer had been arranged.
A vital role
The palliative care team's main task in all three cases was to help patients, families and professional carers to accept palliative management from that point onwards. Once that had been acknowledged, issues such as treatment priorities, symptom control and placement became clearer.
However, it can be difficult for staff who are accustomed to working in a curative environment to address these issues and access to specialist palliative care can help both them and patients in dealing with these difficult and emotive issues.
- The patients' names have been changed