Research looks at support for end-of-life care providers at home

A new research collaboration between Te Herenga Waka—Victoria University of Wellington and Capital and Coast District Health Board (CCDHB) seeks to understand the needs of New Zealand families whose loved ones spend their last months and days of life at home.

Lead researcher and Senior Lecturer Dr Kathy Nelson says the numbers and age of people needing palliative support for a home-based death is steadily rising each year.

“Little is known about the support needs of whānau and friends who care for someone who dies at home,” she says.

“It’s important for us to talk about what goes well and what doesn’t go well in those situations so families can be better prepared and supported by services.”

Dr Nelson has personal experience in this area. Five years ago she cared for her husband until he passed away at home.

“He always wanted to die at home and I wanted to support him in that, but even as a nurse I felt I could have benefitted from further explanation about the last hours of life,” she says.

“It gave me a sense of some of the gaps there are in terms of support for families.”

CCDHB Primary Care Advisor Dr Ken Greer says the study is part of a bigger project looking at supporting people to live well and die well at the end of life.

“We want to ensure families have the support they need during this precious time,” he says.

“We don’t want to medicalise death; we want people to have the choice to be at home with people they love and familiar surroundings, and we want to support those families and loved ones to care for the dying in the best possible way.”

Dr Greer says a home-based death can impact families in various ways, including the financial difficulty of taking time off work to care for a loved one. The support needs of a family can also vary depending on culture and context.

74 percent of deaths within the CCDHB district in 2016/2017 required palliative care, and 27 percent of home-based deaths in the region do not utilise palliative care services to support the end-of-life process.

According to Dr Nelson, these conversations are crucial for informing the safe and effective provision of care for people dying at home in our communities.

“Understanding death is a part of life,” she says.

Study details

Researchers are looking for participants who:

  • Have cared for a person (for at least two weeks) who wished to die at home
  • Cared for this person at least 6 months ago and no more than 6 years ago
  • Are 16 years or older

Participants can be involved in a focus group, a talanoa, or an interview.

This study has approval from the Health and Disability Ethics Committee (19/CEN/197)

For more information or to register interest in the study contact Dr Kathy Nelson