Lisa Williams reports on Te Arai’s new paper in the International Journal of Palliative Care Nursing titled, Complex contradictions in conceptualisations of ‘dignity’ in palliative care.
IJPN-paper-revisions Jan 2018
Recently I finished a novel set in the 1950s that involved the death of an old woman from cancer. Now that the end was near, her daughter had come over to the UK from the States to stay with her father and help out. Although the GP had recommended that Mum go into hospital, everyone was determined that she die at home. Mum regretted being a nuisance but her body just wasn’t letting her go as quickly as she’d like.
Dad and daughter pretty much sat downstairs being sad, regretting Mum’s suffering and drinking cups of tea. The nurse or the GP visited every day and the daughter went upstairs at random times to sit with Mum. Eventually the inevitable happened and she gently faded away.
If only real life endings conformed to the conventions of fiction.
Tidy deaths. Not the ones where Mum’s pain can’t be controlled, she needs 24-7 hands-on personal care, everybody’s beyond exhausted and the doctors just can’t be sure how long this dying business is going to take.
Yet what everyone can agree on is the need for the dying to be treated with dignity. Indeed, the World Health Organization enshrines it in its definition of palliative care, which focuses on “improving the symptoms, dignity, and quality of life of people approaching the end of their lives.”
But what actually does dying with dignity mean? Opinions vary and no one seems to have it nailed down. Even so, it has been identified as a key indicator of good end-of-life practice (Quinn and Thomas 2017), and tools such as the Views of Informal Carers – Evaluation of Services (VOICES) questionnaire (Addington-Hall and McCarthy 1995) seek to measure it.
Six items about dignity are included within VOICES and data regarding dignity collected from VOICES has supported interesting and important research findings. However, when we were trialling the adaptation of VOICES to the New Zealand context via one-on-one interviews, we noticed a mismatch between what some family members were saying about their relative’s end of life experience and their reports on dignity. Just about everybody agreed their family member was treated with dignity by healthcare professionals. But then some went on to tell upsetting stories about the care they received. Here’s an example from a case study we included in our paper:
They put a monitor on her, on one of these clips, which monitors the pulse rate and oxygenation and it kept alarming all the time because her pulse rate was actually very high. No nurse came here to do anything about her, after a while we, somebody went to the nursing station and asked them, told them about it and her nurse was on tea break or something, and so another nurse came in and left it connected but switched off the alarm. [We thought] this is great, this is bloody great.” I said, “What’s the point of having it on there?” . . . So it wasn’t impressive. We weren’t happy with the way things went in there. Maybe it was the holiday staffing that had a lot to do with it.
Yet this same family indicated that she was treated with dignity and respect by the hospital staff. Hmmmm.
The conclusion we came to is that while dignity is a key focus of patient-centered healthcare, we think there’s a disconnect between lay and professional understandings of dignity within a palliative care context. The people we interviewed framed dignity in two main ways: as emotional connection with staff and as the adequate performance of specific physical care tasks such as turning, washing, cleaning and checking on the patient. They didn’t mention that dignity might be conceptualised differently, or perhaps be affected by the bigger picture pressures of (for example) long-standing underfunding of services, overcrowding in emergency departments or the stress on hospital administrators to meet financial targets.
While we believe survey methods such as VOICES are extremely important, we think more work needs to be done to capture people’s conceptualisations of dignity, so we’re all on the same page when comes to helping them die with dignity.
Want more info on VOICES in New Zealand? Read Rosemary Frey’s paper: The views of informal carers’ evaluation of services (VOICES): Toward an adaptation for the New Zealand bicultural context.
Addington-Hall JM and McCarthy, M (1995) Regional study of care for the dying: Methods and sample characteristics. Palliat Med 9: 27-35.
Quinn B and Thomas K (2017) Using the Gold Standards Framework to deliver good end of life care. Nurs. Manag 23(10): 20-25.
World Health Organization (2011) WHO better practices for older people. World Health