Hospice enrollment in young adult LGBTQ + decedents with cancer: a multi-site single healthcare system study.

BACKGROUND

Hospice is specialized medical care that strives to provide comfort to dying patients. To our knowledge, no study has examined the percentage of young adult LGBTQ + patients with cancer who enrolled in hospice and circumstances that surround enrollment/non-enrollment.

METHODS

A single healthcare system, 4000 + self-reported LGBTQ + database of patients with cancer identified young adult decedents (18-39 years old at death) to report the percentage who died with hospice, the conversations that preceded hospice enrollment, time-on-hospice, and circumstances that surrounded the deaths of those not enrolled.

RESULTS

From the database, 43 decedents were identified with a median age at death (range) of 33 years old (20, 39 years). Twenty had self-identified as gay/lesbian, and 23 as bisexual. Twenty-nine decedents (67% (95% CI: 51, 81%)) were enrolled in hospice (3 not enrolled and died unexpectedly; 11 with unknown hospice outcome). Conversations that preceded enrollment discussed (1) limited cancer therapeutic options with worsening end-of-life symptoms and how hospice could help ("discussed… decline and how patient would not want to die hooked up to machines"); (2) medical staff's acknowledgement of same sex spouse/life partners ("[She] is here with her wife"); (3) the inclusion of the birth family in end-of-life discussions, especially if the decedent had been single ("Her father met us… this was difficult news for him to hear."). Four of 18 decedents with known date of hospice enrollment died 3 or fewer days after enrollment.

CONCLUSIONS

Most young adult LGBTQ + decedents with cancer receive hospice services with thoughtful and inclusive conversations that precede enrollment. For some, time-on-hospice appears limited.