The risk of developing cancer increases with age, with about 77 % of all cancers diagnosed in people aged 55 and older [1]. Although the exact number of the gay elderly population is not known, the National Gay and Lesbian Task Force Policy Institute estimates that 1.4–3.8 million US Americans over 65 are LGBT based on a range of 5−10 % of the US population. They project that this population will expand and reach between 3.6 and 7.2 million by 2030 [2].

The risk of life-threatening illness, including cancer, among lesbians, gay men and transsexuals is unfortunately high. The risks of smoking and alcohol abuse are higher among LGBT people [3–11], which in turn are associated with higher risk of some cancers [12–14]. Lesbians also have a higher lifetime risk of breast, cervical, uterine and ovarian cancer than heterosexual women [15, 16]. Gay men have a much higher risk of anal cancer [17] as well as HIV-related cancers [18–24]. There is a greater risk of HIV, breast and prostate cancer for male to female transgender people [14, 25, 26], and of ovarian, breast and cervical cancer for female to male transgender people [26].

There are factors that contribute to poorer prognosis and outcome in patients with cancer; for example, if the cancer is detected at a later stage, obesity (excess body weight contributing to one out of five cancer-related deaths) [27], or low socioeconomic background [28], are all factors that may contribute to poorer prognosis in lesbian women. Although their overall risk doesn’t differ from heterosexual women, women in same-sex relationships have three times greater age-adjusted risk of dying from breast cancer [29]. For a more detailed discussion of these factors please see Fredriksen-Goldsen et al. (Chap. 4).

Recent studies have found that almost 75 % of lesbian and gay seniors live alone, which places them at increased risk of isolation [30, 31], often translating into not having a caregiver. While adult children and other family members are frequently the caregivers for elders facing an illness that has a poor prognosis, studies have found [32] that lesbian and gay seniors are less likely to have children to care for them at times of illness. While it is well recognized that lesbian and gay elders more often rely on friends and informal caregivers, “families of choice”, than birth families as do their heterosexual peers [33], the sizeable increase in LGBT people who are aging and nearing the end of life will place considerable strain on these families of choice.

Based on the projected numbers of LGBT seniors, the significant number of LGBT people being diagnosed with advanced cancers, as well as those who may not have immediate family to care for them as they age, it is clear that there is a sizeable LGBT population for whom end of life care services are required.

Receiving a diagnosis with a life-limiting prognosis is one of life’s most arduous trials. People often experience physical suffering, psychological anguish and spiritual distress, resulting in strain on both the patient and caregivers [34, 35]. There are many challenges that the patient and his/her loved ones have to face including deliberating treatment options, choosing the appropriate treatment facilities to receive care in, deciding where to spend one’s last days, making legal choices such as writing wills, and determining who will make treatment choices when one is no longer able to do so [36]. Relationships with family, friends, and spiritual communities may shift, and communication with the healthcare team becomes central to the care received [37]. However, over and above the tremendous challenges that most people face at end of life, there are several significant additional obstacles that LGBT elders at end of life encounter, barriers that often prevent them from receiving appropriate end of life care.

I ask people to look inside themselves, and I ask them, ‘do you love somebody? If you do, can you imagine being denied access to them at the end of life, when love is most needed?’¹ C.M.

The most common kinds of care provided to those at end of life are palliative care (provided to patients with serious illnesses, including, but not limited to, at end of life) and hospice care (provided to patients at the end of life.) The goals of both palliative and hospice care are to prevent and alleviate suffering, and enhance the patient’s quality of life by closely attending to the patient’s physical, psychological, social and spiritual needs. Care is provided by a team of professionals including a doctor, nurse, social worker, chaplain, occupational therapist and a wide range of complementary therapists, and includes attention to the patient’s medical needs as well as the patient and the family’s psychological, psychosocial, legal, and spiritual needs. Most importantly, care is patient-and-family/caregiver focused, and tailored to the specific patient and family’s unique wishes. Usually a patient is referred to the palliative care team by their treating physician, and palliative care is provided in tandem with the ongoing medical care the patient is receiving. Delivery of palliative care has been shown to reduce symptoms, alleviate suffering, improve the coordination of care, enhance doctor-patient communication, and result in the patient’s and family’s satisfaction with the care provided [34, 38–52].

In providing end of life care, consideration of the patient’s culture and life context is essential; both culture and life context strongly influence the patient and their loved ones’ response to the diagnosis and illness, the discussion and decisions the patient and loved one have about treatment preferences, and their deliberations and choices about the end of life care, including information and health communication methods that they prefer [53–55]. Lack of sensitivity to, and lack of respect for cultural and social differences may compromise end of life care for racial/ethnic minority [56] and sexual minority patients. Most of the early studies of patients at end of life in the US focused on white patients, but in recent years there have been a wide range of studies focusing on the attitudes, values, beliefs and access to end of life care of racial and ethnic minorities [56–66], confirming that there are in fact differences in beliefs and perspectives between divergent groups. Studies have found that race, religion, ethnicity, gender, age, and culture strongly influence (a) end of life-sustaining measures [67–74], (b) end of life care preferences [75], (c) type of information patients would like to receive [76, 77], and (d) preferred health communication methods [78, 79]. It is therefore logical that sexual and gender identity are also important factors in determining needs and preferences of patients.

In order to deliver person-centered palliative care to LGBT patients, an in-depth understanding of the unique needs of LGBT patients with life-limiting illness, as well as their perspectives and care preferences, is essential. However, there remains a paucity of research that focuses specifically on understanding the needs, preferences, and perspectives of LGBT individuals at end of life, and how their preferences and those of their partners influence their end of life care decisions [80–83]. Other than the literature focusing on those with HIV and AIDS, there have only been a handful of studies focusing on (a) the experiences of LGBT people at end of life (e.g. [82, 84–92]) and a few focusing on (b) their anticipated future plans [88, 93, 94].

Harding et al. [80] conducted a systematic review, of the existing literature focusing on the needs, preferences, views, and experiences of LGBT people on end of life care, and were only able to find 12 studies. The majority of the studies focused on lesbian women or gay men, only a few included bisexual individuals, and none examined the needs or preferences of transgender individuals. A few common themes emerged: (a) Partners in Healthcare Decision-Making: In two studies of cancer patients, lesbians with cancer [95] and lesbians and gay men with cancer [84] said they wanted to have their partners included in decision making and treatment planning. However, after making this request to their provider, many patients experienced a lack of sensitivity and/or support by their provider in honoring their request. (b) Providers, Palliative Care and Physician Assisted Suicide: In one of the few studies that assessed preferences at end of life in a community sample [96], several findings emerged: (I) A large proportion of lesbians and gay men wanted their health care provider to know of their wishes if they became incapacitated. However, the majority had not discussed this with their provider. (ii) The majority preferred a focus on pain relief even if it shortened their life, rather than on efforts to extend life. (iii) More than two-thirds of the sample supported physician assisted suicide (PAS), a significantly higher proportion than the acceptance of PAS by heterosexuals. (c) Views of Hospice Care: In a study of lesbian and heterosexual women [83], both groups reported positive views of hospice care, with lesbians holding more positive views. Significantly more heterosexual women preferred life-sustaining efforts than lesbians. The authors concluded that lesbians might not be as hesitant to engage with end of life care services as previously thought. (d) Spirituality: Only one study [97], of lesbians with cancer, examined the role of spirituality in LGBT patients at end of life. They reported that women found spiritual support as a way to cope with cancer. (e) Advance Care Planning: (I) Although there was a high rate of knowledge about living wills and health care proxies among lesbians, less than half had completed either one of these. [96]. (ii) In a study of lesbians and gay men who were providing care to their same-sex partners [93], the majority had advance directives, primarily to protect the caregiver from family members who did not approve of the relationship. Despite these legal protections, most participants remained concerned that their wishes would not be respected. (iii) In a study of heterosexual and lesbian and bisexual women [88], lesbians and bisexual women were found to have adopted long-term care legal planning strategies (e.g., naming a health care proxy) as well as either executing a will, naming a health care proxy, purchasing long term care insurance or discussing living arrangements with family members. A further study by this group [94] examined the effect of social support on the likelihood of advance care planning, and found that lesbian women whose support person was their partner were seven times more likely to have named a health care proxy than heterosexual women without a partner.

The paucity of research on understanding the needs, preferences, and perspectives of LGBT people at end of life, and how their preferences and those of their partners influence their end of life care decisions, currently limits our ability to design evidence-based LGBT-focused palliative care and end of life programs for patients whose cancer prognosis is poor.

When he was admitted into the ER the doctors didn’t acknowledge me; when I said ‘I might be able to give you more of the full story’, they said, ‘And who are you?’ I identified myself as his partner and caregiver. A straight couple wouldn’t have had to do that. C.M.

End of life care usually takes place within healthcare systems such as hospitals, nursing homes, and hospices. There is often a significant lack of cultural sensitivity or training for taking care of LGBT patients among health care professionals [95, 98–101]. Professionals often feel uncomfortable, unprepared or untrained to take care of their LGBT clients. In a recent paper [102], the authors, both of whom are social workers, wrote about being caught “off guard” about a gay or lesbian patient at the end of life, and when discovering they were not heterosexual, being ill-equipped to provide adequate care due to lack of sufficient training. Healthcare providers may also be completely unaware that their patient may be LGBT [82, 92, 103], and not recognize or acknowledge their patient’s partner, nor engage the partner in decision-making, a major omission during end of life, when family ­members, or in the case of many LGBT patients, families of choice [104], are integral to the process, often serving as the primary caregivers. Family members or family of choice members become key participants in the healthcare-patient-family team that works together to help the patient’s journey be one that aligns with the values and beliefs of the patient and his/her loved ones. Lack of understanding about, or lack of acknowledgement and recognition of the ones closest to the LGBT patient can result in a significant and preventable increase in stress and anxiety in both the patient and loved ones. In certain parts of the country, especially where same-sex marriage is still illegal and strongly stigmatized, LGBT people may be treated with disdain. This carries through to the healthcare system. There is documented evidence that some healthcare providers have strong biases against sexual and gender minorities that prevent them from providing quality care to their LGBT patients [105], and that some discriminate against their patients who are not heterosexual [85, 99, 103, 106, 107].

Fear of such discrimination often results in caution or even dread in coming out to healthcare providers, and further distances LGBT elders from seeking medical care. In a study of lesbian women with cancer [95], patients felt their care was being compromised because of heterosexist bias that prevented them from revealing their sexuality. All 24 patients perceived their medical establishment as hostile towards them. In the same study, although the majority of patients wanted their partners to be part of their treatment decision-making and treated as spousal equivalents, partners were often ignored by the health care providers and excluded from treatment planning. In a later study of lesbian and bisexual women with breast cancer [86], the majority disclosed their sexual orientation, as they felt safe in doing so; however, the physician’s neutral reaction was perceived as negative. In a study of older LGBT people [108] almost a quarter reported that they often do not disclose their sexuality, as they have little or no confidence that healthcare professionals will treat them with dignity and respect in their later years. In another study, researchers [96] found that over a third of older respondents did not disclose their sexual orientation to their providers due to their serious concern about a negative response or even poor treatment as a result of provider bias. In a more recent study of gay and lesbian patients over 60 by the same group of researchers [101], this finding was once again confirmed. Over half the respondents were afraid of coming out to their health care providers on whose care they were dependent, and they expressed fear of being mistreated by a healthcare professional who was prejudiced or homophobic. A recent study of older lesbians [92] found that more than one-tenth did not reveal their orientation to any of their providers and more than 10 % reported perceived discrimination in a healthcare setting. Whether due to actual or perceived discrimination, or due to fears of discrimination based on prior experiences or observing discrimination or bad treatment of others by health care providers, homophobia and heterosexism remain significant barriers in lack of communication with health care providers [82].

One of the most haunting and painful aspects of end of life among the LGBT community is the suffering from “disenfranchised grief” [92, 99, 103]. This term was coined in 1989 and is defined as grief that is experienced when “individuals incur a loss that is not or cannot be openly acknowledged, publicly mourned or socially supported” [109]. When an LGBT person loses a life partner and is unable to share it with others or is not accorded the same societal and community acknowledgement and support provided to those who lose a heterosexual spouse, the partner feels disenfranchised and risk of suffering such grief is high, although not universal [99]. At times, the bereaved partner may have to simultaneously deal with death of a partner and coming out at the same time. If the family of the loved one who has passed is not supportive of the relationship, the remaining partner may be left out of funeral and future arrangements. In instances where the family is supportive but the church and broader community are not, the family too may experience disenfranchised grief.

Within the last few years several training programs (e.g., “No Need to Fear, No Need to Hide” created by SAGE [110]) have been developed for healthcare professionals, and have been demonstrated to be effective in enhancing understanding of LGBT patients. Similar programs in other countries [111] have proved equally successful. Although extremely significant, these programs do not focus on the unique needs and challenges that arise during end of life care. To the best of our knowledge, to date, there has been a lack of any specific attention to programs that provide LGBT-friendly end of life or palliative care [82].

Our green folder [with the health care proxy and the power of attorney] went everywhere with us; it was our lifeline. I was always worried about an emergency where we’d have to interact with medical care staff who didn’t know about us, so our green folder went everywhere with us. C.M.

Since 2010, three major legal changes have taken place that have the possibility of substantially improving end of life care for LGBT couples in a same-sex marriage. The end of life care implications of each are described below.