Dying with dignity in aged care: staff at Brightwater elderly care went to ensure residents die with dignity and comfort in the place that has become their home.

Providing high quality care for the dying, irrespective of diagnosis or where they are being cared for, is the vision of the Liverpool Care Pathway (LCP).

Helping realise this vision in Palmerston North is LCP facilitator Amanda Taylor who arrived in New Zealand in August 2005. Her rote was to implement the LCP outside Arohanui Hospice where it has been operating since February 2005. Taylor had already worked as an LPC co-ordinator for two years in the United Kingdom (UK) before coming to New Zealand.

"Hospices can't do all the palliative care the community needs, nor should they need to. Palliative care should be available to anyone who needs it, no matter what the diagnosis or where they choose to die."

The LPC project is now running in three aged-care facilities in Palmerston North (Brightwater Elderly Care, Peppertree Hospital and Horowhenua Masonic Village), and an oncology/haematology ward at Palmerston North Hospital It is about to be launched into a second ward--a general medical ward with a renal and respiratory focus. The pilot project is due to end in May this year, when further funding will be sought to roll it out regionally.

The LCP has been running at Brightwater for just over a year. Nurse educator Debbie Gallagher believes it has already had a huge impact on staff satisfaction and the quality of care for dying residents.

"As our population ages, an increasing number of people are dying in aged residential care. They are entering our facilities much frailer than in previous years and with co-morbidities. We no longer send people to hospital to die and, wherever possible, manage all their symptoms and enable them to die with dignity and comfort in the place that has become their home. Hospitals will send patients back to us for comfort care, when it is obvious nothing more can be done to prolong their lives".

Gallagher remembers times in previous years when staff at Brightwater and other aged-care facilities had not managed people's deaths as well as they could have. "Nurses working in residential care have a range of experience, as do the doctors who visit our residents. Not all were educated about the dying process, nor was knowledge being shared between all involved in a patient's care. Sometimes a patient would get distressed after hours when there was no doctor or pharmacist available. We would ring the hospice to get advice and help, but by then staff, families and the patient could have become very distressed.

"We were not always very good at recognising when someone was dying. We would continue to attempt to preserve life and to feed people when it was no longer appropriate to do so. We weren't preparing property for someone's death. With the LCP, we have a tool to assist all those involved in someone's care to work as a team. We now allow people to die, discontinue inappropriate medications and interventions, and ensure the right medication to manage people's pain, agitation, respiratory tract secretions, nausea and vomiting and dyspnoea is prescribed correctly and as required. These are the five major symptoms identified in the LCP document."

In her role as a palliative care community nurse, based at Arohonui Hospice, Stephani Ash spent a long time working with and supporting Brightwater staff before the LCP was introduced there. This included helping staff gain confidence in the use of subcutaneous pumps and syringe drivers. Implementing the pathway requires a huge commitment, she says, and at least 80 percent of staff need to attend education sessions before the programme is launched. Taylor ran three four-hour training sessions at Arohanui Hospice for Brighwater staff to prepare them for the pathway. Staff were required to attend one of these sessions, which covered such things as the definition of palliative care, how to use the LCP document, following through the care of an imaginary patient, and how to discuss cultural and religious needs with families. Eighty-nine percent of staff (registered and enrolled nurses, care assistants and the chaplain) attended the training, with an hour's session for the cooks, cleaners and the gardener. "They asked some great questions," said Taylor. "The caregivers participated wholeheartedly." Taylor ran about 25 half-hour sessions at Palmerston North Hospital, as staff prepared for the launch of the LCP in ward 23. Separate education evenings were run for the general practice teams, including pharmacists. "Basically we will talk about the LCP with anyone who will Listen," she said.

Since the pathway was introduced at Brighwater, Ash has seen staff grow in confidence in how to care for people who are dying. "My role is simply to offer support if they need it, but the pathway gives them almost aLL the information they need. The LCP empowers people to provide a gold standard of care."

The average length of time patients at Brightwater are on the pathway is around 56 hours. Some may be on it a week, others the last few days of life and sometimes for just an hour or two. Once a patient has been assessed as being close to death, the GP will explain to the family that the care of their loved one has now moved to the palliative phase. Some families will want to know more about what the pathway involves. A number of leaflets will be offered to them at different times, including What to expect when someone is dying, Coping with bereavement and Planning for a funeral.

"At this stage the LCP documentation replaces all other documentation," said Gallagher. "This makes everything so much easier and more streamlined, ensuring continuity of care. Unnecessary procedures like blood tests and taking blood pressures are discontinued, along with any inappropriate nursing interventions. Care at this stage is all about comfort. We may place someone on an air mattress, use fans, an aromatherapy burner and provide mouth cares only. We will took at someone's spiritual and cultural needs and check with families what they would like to happen when their loved one dies, eg should we call the chaplain?"

The LCP document is based largely around "yes" and "no" answers to achieving goals around the five major symptoms. The initial assessment sheet takes around 20 minutes to complete, with other sheets covering the four-hourly checks around the major care goats. These sheets are titled in by the nurse, in consultation with the care assistant, and take only two or three minutes to complete. There are questions concerning the family/whanau and a separate sheet covering care after death. Space is available for further progress notes, if these are considered necessary.

The document has been adapted for New Zealand conditions and population needs and includes such things as the blessing of the room after someone has died. It is designed to be updated and revised easily. The project team considers the document very auditable and helpful for the research project.

Gallagher believes the LCP has proved as beneficial to care assistants at Brightwater as to nurses. "Our care assistants get the closest to our patients, as they are with them all the time. They appreciate the security of the pathway. Knowing they are doing the best job they can gives them a real sense of satisfaction." Brightwater charge nurse Noreen Carlin has a great deal of confidence in the LCP, seeing it as providing an action plan to manage patients' terminal care. "In the past, we were sometimes caught short, for example not having the appropriate pain relief medication at night. This was distressing for staff and families. Now we start planning for someone's death, in consultation with the GP, during their last illness. Using tick boxes for the assessments certainly makes the paperwork easier and clearer. Having all the drugs and the amounts to use all charted on a template is very helpful for the doctors and our nurses. There has been a real improvement to the quality of people's deaths since we have been using the pathway."

Care assistant Ginny Chapman says the LCP has made life easier for staff and has greatly assisted continuity of care for patients. "It's particularly good at shift handover, because the document shows very clearly what staff need to do next. Everyone wants their parent to have a nice death with as much dignity as possible. We have had no awful deaths since we've been using the pathway."

Taylor and her family will be leaving New Zealand in early June to return to the UK. She will Leave satisfied that the LCP team has implemented it well and hopeful that funding will be secured from MidCentral District Health Board for the proposed district-wide rollout. This will ensure the pathway will be more accessible to a greater number of patients and their families across the region, irrespective of diagnosis or place of care.