Study shows healthcare workers' perceptions and challenges related to end-of-life care and choices.
Despite a plethora of local, state-based, national and international guidelines and resources, it is clear professionals providing palliative care face considerable challenges, many specific to their area of care.
In order to optimise patient care, there is a need for healthcare professionals across all disciplines and settings to be equipped with the knowledge and skills to identify patients with palliative needs and follow-up with quality care and appropriate referrals.
I undertook a study into the situation, along with a multidisciplinary team from a large private tertiary hospital in Western Australia. The focus was to identify multidisciplinary team members’ perspectives in providing palliative care and their education and support needs in this area. We used a combined quantitative and qualitative approach with a validated instrument and four focus groups.
The study achieved a pleasing 50 per cent response rate, with more than 300 participants recruited across nursing, medicine, allied health and pastoral care.
The mean age for all respondents was 46 years and 84 per cent were female. Ninety percent of participants recorded a limited or working knowledge of palliative care and only 7 per cent held some form of graduate qualification in palliative care.
Results showed participants from critical care areas were more confident than those in perioperative and general ward areas across symptom management, and patient and family interactions and support – especially symptom management.
The study showed staff thought more could be done to help someone achieve a sense of peace at the end of life, that end of life need not be a time of great suffering and that families have the right to refuse treatment aimed at prolonging life. Those in critical care areas were more comfortable caring for the dying patient and talking to families about death, although ward staff were more supportive of patient referral to hospice care.
Overall, participants agreed or strongly agreed that patients should have the right to determine their own degree of medical and psychosocial intervention, that analgesia should be administered as needed and that patients should be kept pain-free.
Participants from both groups also strongly agreed that spiritual care of the terminally ill was important and tended to agree that palliative care should be standard for those in the terminal phase of their illness.
The focus groups revealed disparity about the meaning of palliative care. Misconceptions and barriers were clear. Some participants stated that active treatment stopped once the palliative care team became involved and that some patients and family members think death is imminent when palliative care is suggested. Some nurses expressed frustration that doctors either delay palliative care or may be reluctant to refer patients to it for a variety of reasons. Whilst not overtly stated, there was general consensus that palliative care should start sooner than later, as it assists with family support and adjustment.
In general, findings showed that health professionals, including nurses, doctors, allied health and pastoral carers, would benefit from extending their scope of palliative care practice. To achieve this, we are committed to the implementation of a hospital-wide, multidisciplinary model of palliative care that includes clinical guidelines, education and training.
Palliative care is every healthcare professional’s business. The need for it in Australia has never been greater. As in many Western countries, advances such as ageing populations, advances in healthcare and general wellbeing have resulted in Australians living longer and being relatively independent, despite often suffering from multiple morbidities.
About 144,000 Australians die annually; of these, 54 per cent die in hospital and an estimated 25–50 per cent have potential palliative care needs, with not all requiring specialist palliative care.
Most deaths in Australia are largely attributable to chronic diseases, including cancer. Although most Australians would prefer to die at home, most people die in acute-care settings. This means all health professionals have a role to play in managing and delivering good palliative care for the patient, family and carers.
The World Health Organization states that good palliative care refers to the provision of impeccable assessment and management of numerous and often complex symptoms. This management may be required from the time of diagnosis throughout the illness trajectory, and in chronic as well as life-threatening/limiting conditions. The Worldwide Palliative Care Alliance proposes that there should be no time or prognostic limits placed on palliative care delivery, which contrasts with the previously widely held belief that it was something provided to patients at the end of life.
It is not uncommon to find patients requiring palliative and end-of-life care in a variety of settings. Extending palliative care to these patients is important, and providing quality care to these patients and their families can be challenging. Some professionals have reported difficulty in recognising that a patient requires palliative care or is approaching the end of life. This is particularly the case for patients with multiple morbidities and complex needs. In some instances, a lack of understanding of the principles that underpin palliative care and the potential benefits for patients can result in professionals continuing to focus on aggressive therapies that promote duration, often at the expense of quality of life.
It is critical that care settings provide supporting clinical services, best-practice guidelines and care pathways. Previous research has highlighted that various professionals often feel underprepared and face challenges when providing palliative care to patients. A number of barriers have been cited and can include a lack of: understanding of the principles that underpin palliative care and the potential benefits for their patient, palliative care-specific education, awareness of referral criteria and care pathways, and communication skills necessary to handle sensitive issues such as prognosis and eliciting end-of-life preferences. Challenges related to the management of intense emotions, time constraints and role delineation have also been documented.
Our study identified that more work needs to be done in preparing healthcare professionals with education and resources to provide more focused care for people requiring palliative care.
Future studies will focus on the development and evaluation hospital wide palliative care policies guidelines and referral pathways. We hope this will take place in 2015.
Leanne Monterosso is the chair of nursing, School of Nursing and Midwifery, University of Notre Dame Australia.Do you have an idea for a story?
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