Original Article

Supportive Care in Cancer

, Volume 23, Issue 2, pp 491-499

First online:

Length of home hospice care, family-perceived timing of referrals, perceived quality of care, and quality of death and dying in terminally ill cancer patients who died at home

  • Akemi YamagishiAffiliated withDepartment of Community Health Care, Hamamatsu University School of Medicine Email author 
  • , Tatsuya MoritaAffiliated withPalliative Care Team, Department of Palliative and Supportive Care, Seirei Mikatahara General Hospital
  • , Shohei KawagoeAffiliated withAozora Clinic
  • , Megumi ShimizuAffiliated withDepartment of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine
  • , Taketoshi OzawaAffiliated withMegumi Zaitaku Clinic
  • , Emi AnAffiliated withHananotani Clinic
  • , Makoto KobayakawaAffiliated withPalliative Care Team, Hiroshima University Hospital
  • , Satoru TsunetoAffiliated withDepartment of Palliative Medicine, Graduate School of Medicine, Osaka University
  • , Yasuo ShimaAffiliated withDepartment of Palliative Medicine, Tsukuba Medical Center Hospital
    • , Mitsunori MiyashitaAffiliated withDepartment of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine

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Abstract

Purpose

This study aims to clarify the length of home hospice care, family-perceived timing of referrals, and their effects on the family-perceived quality of care and quality of death and dying of terminally ill cancer patients who died at home and identify the determinants of perceived late referrals.

Methods

A multicenter questionnaire survey was conducted involving 1,052 family members of cancer patients who died at home supported by 15 home-based hospice services throughout Japan.

Results

A total of 693 responses were analyzed (effective response rate, 66 %). Patients received home-based hospice care for a median of 35.0 days, and 8.0 % received home hospice care for less than 1 week. While 1.5 % of the families reported the timing of referrals as early, 42 % reported the timing as late or too late. The families of patients with a length of care of less than 4 weeks were more likely to regard the timing of referrals as late or too late. The patients of family members who regarded the timing of referrals as late or too late had a significantly lower perceived quality of care (effect size, 0.18; P = 0.039) and lower quality of death and dying (effect size, 0.15, P = 0.063). Independent determinants of higher likelihoods of perceived late referrals included: frequent visits to emergency departments, patient being unprepared for worsening condition, and patient having concerns about relationship with new doctor. Discharge nurse availability was independently associated with lower likelihoods of perceived late referrals.

Conclusions

A significant number of bereaved families regarded the timing of referrals to home hospices as late, and the perceived timing was associated with the family-perceived quality of care and quality of death and dying. Systematic strategies to overcome the barriers related to perceived late referrals are necessary.

Keywords

Hospice Referral Length of stay Quality of death and dying Quality of care