“By the time she got sick it was just kind of too late”: Hearing the voices of bereaved lesbian, gay, and bisexual older women about advanced care planning.


Each month, Professor Catherine Walshe, Editor-in-Chief of ‘Palliative Medicine’, chooses an article that readers may find particularly interesting or useful and invites the authors to draw out the key points on the EAPC blog. Focusing on research that is novel, a robust review, from a specific country or just slightly left of field, the ‘Editor’s Choice’ post aims to share experience and stimulate ideas. We hope you’ll read the longer article in ‘Palliative Medicine’ – EAPC members can access a FREE copy from the EAPC website.

Korijna G. Valenti, Ph.D, introduces the background to the longer article selected as ‘Editor’s Choice’ in the February 2022 issue of ‘Palliative Medicine’. Korijna is Postdoctoral Fellow in Palliative Care and Aging at the University of Colorado School of Medicine. Her research focuses on geriatric palliative care for underserved populations by developing interventions that can be used to improve the goals, emotional trajectory, and relationship quality for lesbian, gay, bisexual, transgender (LGBT) older adult patients to improve patient-dyad outcomes.

Korijna G. Valenti
Korijna G. Valenti

Just as I was beginning my dissertation, I received a call that one of my dearest friends was dying and she had little time left. I flew across the country to our tiny hometown where she still lived. With two other close friends who also flew in from faraway places, as well as another of her former partners, I spent the next two days battling with the healthcare staff to allow us to be with her when she died. There had been no prior discussions about how and where she wanted to die, what her goals of care were, or how she wanted to manage her pain.

Communication around serious illness and palliative and end-of-life care is critical for older adults in historically underserved populations. For lesbian, gay and bisexual (LGB) older women who have lost a spouse or partner, advance care planning communication underlies a critical health equity issue. The death of a partner or spouse may highlight their own unmet healthcare needs and the experience of communicating with clinicians during a spouse or partner’s death can inform how they view their own future communication with clinicians. Understanding these interactions should therefore be a key aim in palliative care.  

LGB older women are rarely included in research about communication around palliative care and end-of-life care overall. Nevertheless, their experiences and perspectives are a crucial component to understanding the needs of this community. In our recent article published in Palliative Medicine, we report on findings from a qualitative study about the experiences of 16 bereaved LGB older women from across the United States regarding their experiences in communication with clinicians as well as their spouses or partners.

We found that without inclusion from clinicians or clear and supportive communication with clinicians, older LGB participants felt emotional strain, neglect, confusion, and isolation. We also found that participants who avoided advance care planning discussions with their spouse or partner often did not know what they wanted or needed at the end of life. Participants reflected on their lack of knowledge about palliative or end-of-life care, recalling interactions with clinicians—both negative and positive—that impacted their understanding of what palliative care meant. During the interviews, participants spoke about what they knew or were told about what palliative care could offer in terms of helping them articulate their spouse or partner’s goals of care as they faced serious life-limiting illness, and how palliative care differed from hospice care. Absence of communication about palliative care or hospice left one participant questioning why services were not utilized, “Why did she not have hospice?”  Not understanding what hospice could provide meant they did not receive services, and, unfortunately, the participant’s wife died in a “traumatic and miserable” way.

However, we also found that participants who had consistently deep and meaningful communication with their spouses or partners, as well as with clinicians, during the trajectory of their spouse or partner’s illness expressed more positive experiences before and during their spouse or partner’s death. As one participant who had engaged in deep conversations with her partner about care goals and end-of-life wishes recalled, “I didn’t know this was gonna be how she was going to die, but it was just so beautiful.”

Our study suggests training, recognition, acceptance, and dyad-based communication interventions are four areas where clinicians may improve and better address disparities for LGB older women with serious illness and their loved ones.

In the end, we just had to hope that what we offered my dear friend was enough. How serendipitous that my work with older lesbian, gay, and bisexual widows would come just after the death of a someone who epitomized the struggles of the LGBT community in her final days.  

This post relates to the longer article “By the time she got sick it was just kind of too late”: A qualitative study on advanced care planning among bereaved lesbian, gay, and bisexual older women” by Korijina G Valenti, Leah M Janssen, Susan Enguidanos, Kate de Medeiros, published in Palliative Medicine. Article first published online 21st December 2021. Issue published: Volume 36, issue 2, pp 375-385.

Links and resources

Read earlier Palliative Medicine Editor’s Choice posts on the EAPC blog.

Follow Palliative Medicine on Twitter @palliativemedj

About the author

Korijna Valenti is Postdoctoral Fellow in Palliative Care and Aging at the University of Colorado School of Medicine. Her current research examines communication approaches and their impact on a) palliative care practitioners’ (PCPs) utilization of sexual orientation and gender identity (SOGI) data; b) PCPs experiences with LGBT older adult patients (individually and as a dyad); and c) LGBT older adult patient and dyad knowledge of palliative care and their experiences around palliative care communication. Twitter: @korijander


If you are currently an Individual or Associate EAPC Member, you have full access to the Members Area of the EAPC website, and the chance to download a free PDF of all ‘Editor’s Choice’ articles, as well as many other membership benefits. Just click here, https://www.eapcnet.eu/members/editors-choice/ enter your email address and membership password and choose from the list of journal articles for 2022.

Join, or renew your membership here. Members of our national associations can join the EAPC for free


This entry was posted in Bereavement, Carers, Minority Communities, Palliative Medicine: Editor's Choice, PATIENT & FAMILY CARE, PSYCHO-SOCIAL ISSUES and tagged . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.