A new study is investigating the support required by people with cancer who do not have access to hospice services or choose not to use them.

The study is led by Dr Jessica Young, a post-doctoral research fellow from Te Kura Tātai Hauora—School of Health at Te Herenga Waka—Victoria University of Wellington.

Dr Young says the research aims to identify the best ways to support people who do not use hospice care at the end of their life, either because they don’t meet the hospice’s assessment criteria or have said “no” to hospice care.

“We want to understand how people with cancer and their families are being supported and their preferences for support, outside of hospice services.”

Funding constraints mean hospice care is restricted to those with the highest needs. In 2021, 20,000 people used hospice services, with the government funding half the cost and hospices funding the $87 million shortfall, Dr Young says.

Research suggests about 78 percent of people who die of cancer use hospice services at some stage of their illness, though many more would benefit from these services, she says. 

“Approximately 9,000 New Zealanders die from cancer each year so that’s about 2000 people annually who miss out on hospice care for various reasons.”

While there are national criteria for referrals to hospice care, assessment policies can vary between hospices.

A referral may be declined if the person does not have a high enough clinical need for specialist services—in which case they’ll be managed in primary care—or their prognosis is unclear, Dr Young says.

“International research suggests eligibility issues, and cultural and systemic barriers can prevent access, and patients may decline hospice care because they or their family members are not ready. But we know very little about the situation in Aotearoa. We really want to speak to people so we can better understand their experiences and what might help them.”

Dr Young is inviting people with cancer who would like to participate in the study to contact her on email jessica.young@vuw.ac.nz or phone 04 886 4513. Interviews can be conducted via Zoom or by phone.

Participation won’t affect the person’s ability to use hospice services at a later date, she says.

Study participants will receive a $30 supermarket voucher (per interview) to help acknowledge their contribution.

The study is funded by the Cancer Society of New Zealand. Outcomes will include a resource that can be used by organisations such as the Cancer Society and hospices, as well as by general practitioners, to help them support people who choose not to use or are declined hospice services.

The study has been approved by the Northern B Health and Disability Ethics Committee 2021 (EXP 11724).

For more information, contact Dr Jessica Young on email jessica.young@vuw.ac.nz or phone 04 886 4513.

ENDS