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By Vivian Lam

Holistic care is essential in the mission to fully meet a patient's needs. And a holistic perspective is the backbone of end of life and palliative care--it's the basis of having an interprofessional team that acknowledges that quality of life is multifaceted, and lives are diverse. But getting to know a patient enough to be able to be "holistic" can be difficult. And in the case of LGBTQ individuals, getting to know the patient as a whole is not only all the more important—it’s integral.

According to a 2016 Gallup survey, 4.1% of U.S. adults openly identify as LGBTQ, or around 10 million adults. Of that 4.1%, 2.4% are Baby Boomers (born 1945 to 1964), and 1.4% Traditionalists (born 1913-1945). And in order to be able to provide holistic care to LGBTQ patients, it’s important to recognize that LGBTQ individuals have specific medical, psychological, and social needs. They are more likely to experience mental health problems, due to a number of social stressors including prejudice, stigmatization, anti-gay violence, and internalized homophobia. Many are susceptible to depression, suicide, and substance abuse. And many face isolation, and difficulty accessing resources and appropriate care.

On the flipside, LGBTQ individuals are more likely to have an advance directive completed as a legal safeguard to their wishes, and are likely to have “chosen” or “lavender” families and strong community ties, and highlight the importance of including these individuals in developing a support system.

To begin to provide holistic care to LGBTQ patients, it is important to have basic cultural competency on LGBTQ people and their historical and contemporary experiences in healthcare. Though some strides have been made in incorporating LGBTQ cultural competency in healthcare training, much can be done in executing these findings in practice.  And it is very important to remember that small steps can quickly translate into big steps—starting with the basic challenges that LGBTQ patients face at the end-of-life.

Anticipating discrimination, and going “back into the closet”

Though strides have been made in fostering acceptance of and earning equal rights for the LGBTQ people, historical trauma and ongoing discrimination strongly color LGBTQ lives today. And for LGBTQ elders who lived in a period of less social acceptance, and harbor a lifetime of discrimination and negative healthcare experiences, an expectation of prejudice on the basis of their sexuality may not only detract from holistic care, but also prevent them from obtaining care in the first place.

Some feel that hospice and palliative care are not services available that are available to them, and will not understand or meet their needs as they relate to sexual orientation or gender identity. Some anticipate receiving worse treatment than their straight and gender-conforming peers. And some feel that they must go “back into the closet” in order to protect themselves from the hostility of hospital or assisted living staff and patients. And transgender individuals’ wishes to be recognized and die as their preferred gender are often disrespected.

Disclosure of sexual and gender identity can aid in providing sensitive and appropriate care, and augment the patient-provider relationship. It can also help identify potential challenges and ways to better support a patient and their loved ones. Though disclosure is ultimately up to the patient, providers need to actively foster an environment where the patien
t feels comfortable enough to disclose their identity.

Best practices for creating a safe space:

• Place a sign that signals that your office is LGBTQ-friendly, and display brochures that are relevant to LGBTQ-health issues.
• Review your literature and forms to ensure they have inclusive language and questions.  Add a transgender option alongside “male/female” in your intake forms.
• Do not assume a patient’s sexuality or gender identity, and do not force a patient to disclose their sexual or gender identity if they are uncomfortable. Instead, introduce yourself with your preferred pronouns, and ask about theirs. Do not assume that a trans patient desires or has undergone surgical or hormonal transition. Make it clear that you are comfortable with their identity, and are willing to learn how to support them through identity-specific issues.
• Try having a conversation, if they are comfortable, about their fears and needs. Be aware of the language you use, and ask about their preferred name and gender pronouns.

Ask questions like:
“Who are the most important people in your life?”
“Do you have a significant other?”
“Are you in a relationship?”
“Do you live with anyone?”
“Tell me more about yourself?”

Family, bereavement, and legal challenges

Isolation and “non-traditional” family status factor greatly in the delivery and facilitation of care. LGBTQ individuals are more likely to be single, less likely to have children, and more likely to be estranged from their birth families. Many have “families of choice” (also called “lavender families”), composed of close friends and support groups. But for many LGBTQ elders, these chosen families may be threatened by aging and illness, and face trauma from loss in the HIV epidemic in the 1980s and 1990s.

Many feel concern that their partner might not be recognized or be able to serve as their durable power of attorney for medical and end-of-life decision-making. Those without a legal partner or paperwork specifying their wishes face having family members they may not have spoken to for years making decisions on their behalf. For LGBTQ individuals, having a power of attorney in place is top priority.

And the bereaved are vulnerable to being left out of the picture altogether. Non-registered surviving partners are denied family leave and bereavement benefits, automatic inheritance jointly owned property, and may lose the right to determine funeral plans. Many experience disenfranchised grief by not being recognized as needing support, and often carry a greater care burden due to late access to care.

Best practices:

• Ask who the most important people in their life are
• Ensure that their partner is recognized as such and feels supported.
• If they bring someone into the meeting that they introduce as a close friend but may in fact be their partner, emphasize that you are comfortable with their identity and are willing to support them.
• Address legal concerns 

 A paucity of research and training

There are large gaps in the literature in regards to providing care for LGBTQ elders. There has been a general “invisibility” of LGBTQ older adults, due to lack of data collection around sexual orientation and gender identity. And most research and much of the data have been based on the experiences of white, middle class to affluent individuals living in urban areas. The majority of the reports and papers found through an online search on LGBTQ end-of-life care was from the UK and Australia.

In order to fully assess and address the issues and needs that LGBTQ individuals face at the end of life, further research must be done. And greater focus must be placed on the diverse range of experiences that make up the community.

Best practices:

• Make an effort to educate yourself on basic LGBTQ health disparities and terminology, and how to recognize and challenge discriminatory beliefs about LGBTQ people.
• Implement a staff training program and advocate for cultural competency in treating LGBTQ patients.
• Encourage further research on the needs and experiences of diverse LGBTQ patients at the end-of-life.

Treating everyone the same is not the same as meeting someone’s needs. It is not so much a matter of providing equal care and avoiding discrimination than recognizing that sexuality and gender can be an important part to someone’s identity, and does impact their health needs.

Making a big impact in the end-of-life and healthcare experiences of LGBTQ patients requires both little and large effort. Providers must have an open mind, be respectful and compassionate, and acknowledge an individual’s unique life from beginning to end—the basic tenets of holistic end-of-life and palliative care.

It’s simple—but it makes all the difference.

Further resources:
National LGBT Health Education Center (Fenway Institute)
National Resource Center on LGBT Aging
SAGE (Services and Advocacy for GLBT Elders)
LGBT HealthLink
     best and promising practices for LGBT cancer patients
LGBTQ -Inclusive Hospice and Palliative Care (Book)
Creating a Welcoming Clinical Environment for LGBT Patients – Rainbow Welcome Initiative
Providing Welcoming Services and Care for LGBT People – Fenway Institute
“Hiding who I am”: The reality of end of life care for LGBT people – Marie Curie
American Academy of Hospice and Palliative Medicine’s video on providing palliative care to LGBT patients
Search engine for agencies trained on LGBT cultural competency – National Resource Center on LGBT Aging

Vivian Lam is a clinical research coordinator in thoracic oncology at UCSF, striving to contribute tangibly to the fields of end of life and palliative care, and the medical humanities. She enjoys running long distance and warbling the same songs in the shower all year long.

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by Vivian Lam

“Life changes fast.
Life changes in the instant.
You sit down to dinner and life as you know it ends. 
The question of self-pity.”

When does grief become “self-pity”? What is the “proper” way to grieve?

Joan Didion begins writing what would become The Year of Magical Thinking a few days after her husband, John Dunne, dies from a heart attack. Coupled with the mounting health crises of her daughter, Quintana, Didion’s world is thrown out of joint. In the ongoing aftermath of these tragedies, Didion, acclaimed novelist and literary journalist, copes by doing what she has done all her life—write. But this time, her husband is no longer the patient proofreader working beside her, but a ghostly absence she can’t stop turning back to. She tests the threshold where “normal” grief crosses into the “pathological,” picks apart medical and societal indifference towards the patient and the survivor, scrutinizes a vast scientific and literary trove on death and mourning. But in spite of her clinical self-awareness and the terse detachment of her reporting, she can’t break out of an irrational “magical thinking” that sends her down a spiral of uncertainty and regret.

What makes The Year of Magical Thinking a quintessential work in the bereavement canon is not just her analytical prowess, but the strength she finds in vulnerability. What results from her attempts to “come to terms” and “handle things” is an extended elegy to grief and change. In the waves of raw despair that belie how lost and isolated death has left her, Didion demonstrates a resilience that, though failing to triumph, offers illuminating insights on the experience of grief and the insufficiency of our traditional views towards the process of grieving.

We might even find it wrong to consider grief a process in the first place; for Didion, grief comes as a state of being.
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In an interview with New York Magazine, Didion states that one of the main reasons why she wrote this account was to “bring death close.” In direct opposition to the invisibility of death in Western society, Didion conducts a form of investigative reporting on grief—the primary case being herself. With repetitive and desperate precision, she reconstructs and deconstructs the moments leading up to her husband slumping onto the dinner table, and is frustrated by her cloudy memory of following the ambulance only to return home alone with a bag of bloodied clothes. She pores over the apartment doormen time log for the night of December 30, and wonders “Was that ever a heartbeat or was it just electricity” (81)? She jumps back and forth in time, placing all events relative to her husband’s death with an unshakable guilt and unanswerable “what if’s.”

Directly opposing her attempts to gather information and regain control of the situation, Didion is plagued by an “irrational” disengagement with reality. “Magical thinking” refers to a belief that an action or object can influence or change the outcome of an otherwise unrelated course of events. Some might call it “superstitious,” and others might call it “prayer.” For Didion, magical thinking comprises her illogical belief that her husband was “coming back,” and that she would yet be able to save him and “reverse the narrative” (35). She balks at the hospital’s request to donate his eyes and at her own reluctance to donate his shoes, for “[h]ow could he come back if they took his organs, how could he come back if he had no shoes" (41)? She links her resistance against putting her daughter on a trach by “the same fund of superstition” that “she could be fine in the morning, ready to eat, talk, go home” (125).

Compounding these frustrations is what she calls “the vortex effect” (107)—a kind of PTSD triggered by familiar details that send her time travelling back to when her daughter was three years old, to when she and her husband went to dinner at Morton’s every week. “I cannot count the days on which I found myself driving abruptly blinded by tears. The Santa Ana was back. The jacaranda was back” (107). She repeatedly berates herself for being so easily sideswiped by these memories, to not be able to even “get as far as Rite Aid” without being swept in another deluge of regret (121).

So does Didion note the difference between grief and mourning:

“Until now I had been able only to grieve…Grief was passive. Grief happened. Mourning, the act of dealing with grief, required attention. Until now there had been every urgent reason to obliterate any attention that might otherwise have been paid, banish the thought, bring fresh adrenaline to bear on the crisis of the day. I had passed an entire season during which the only words I allowed myself to truly hear were recorded: Wel-come to U-C–L-A.” (143).

She condenses grief into textual form, expressing a fragmentation of thought and experience of reality that exposes a vulnerability she struggles to come to terms with.
Facing these mounting crises, Didion falls back to what she “had been trained since childhood” to do: “read, learn, work it up, go to the literature. Information was control” (44). She references a robust range of sources on death and grief from history and sociology (e.g., Sherwin Nuland’s How We Die, Phillipe Aries’ Western Attitudes Towards Death), psychology (e.g., Freud’s “Mourning and Melancholia”), classic literature (e.g., CS Lewis’ A Grief Observed, Thomas Mann’s The Magic Mountain), poetry (e.g., Auden’s “Funeral Blues”), “professional literature” (e.g., the Harvard Child Bereavement Study, The Merck Manual), and a number of other medical papers. Emily Post’s 1922 book of etiquette, far from being outdated, resonated with her because she “wrote in a world in which mourning was still recognized, allowed and not hidden from view” (57). She was taken by its practicality, as opposed to vague prognostications of abnormality.

Of particular salience was John Murray’s Intensive Care: A Doctor’s Journal, from which she “learned much that proved useful in…[her] daily dealing with the ICU doctors…” (102). So does she know that she has “made headway when a doctor to whom you had made one or another suggested presented, a day later, the plan as his own” (103). For the duration of her daughter’s hospitalization and transfer, Didion expresses a distinct distrust and dissatisfaction with the medical professionals she dealt with. In one particular instance, she argues with a doctor on the day they decided to do a tracheostomy for her daughter. She questions their rationale (“The rule at Duke [for intubation period] was also a week,” “It’s already on schedule,” “Everyone on the neuro units got a trach”), balks at their assumption that the basis for her resistance was the scar (“They were doctors…I was not. Ergo, any concerns I had must be cosmetic, frivolous”), that she didn’t notice that her daughter was taken off the EEG (“Maybe I didn’t notice that? My only child? My unconscious child?”) (123-125). She criticizes the vaguely placating status reports of the medical personnel with a kind of incredulous, dark humor:
“...I was told by a physician's assistant that after his weekend absence he had come in that morning to find Quintana's condition 'encouraging.' I asked what exactly had encouraged him about her condition when he came in that morning. 'She was still alive,' the physician's assistant said” (66).

What does “encouraging” mean? Does “leaving the table” in uncertain condition imply improvement from “not sure at all she would leave the table”? The “gilded-boy story,” used as a memory and comprehension test, “seemed to represent, in its utter impenetrability and apparent disregard for the sensitivity of the patient, the entire situation with which [she] was faced” (105). The condescension and indifference she faces in her attempt to stay informed and participate in her daughter’s care, leads her to so deep an isolation that, in a symbolic assertion of her competence, “it did not immediately occur to [her] that for the mother of a patient to show up at the hospital wearing blue cotton scrubs could only be viewed as a suspicious violation of boundaries” (105).

It is not until she had read the autopsy report that she “[began] to believe what [she] had been repeatedly told: nothing [they] had done or not done had either caused or could have prevented his death” (206). This didn’t mean that she had finally “overcome” her grief, or could now walk without the chains of memory. She still continues to reverse time and get lost in a vortex of memories. But now, instead of “trying to substitute an alternate real” she was “trying to reconstruct the collision, the collapse of the dead star” (183). She, like other survivors, still continues to “look back and see omens” and continue “[l]iving by symbols” because of the nagging feeling that she has not “sufficiently appreciated” something (152). It is the tragedy of knowing that we do not have the power to confidently say “You’re safe. I’m here” (219).

What Didion comes to realize is the insufficiency of words to grant meaning to a senseless event. The safeguard of literature can never sufficiently prepare her for the experience of grief. Nor can the assurances of her doctors ever remedy the helplessness she faces with death. Writing cannot provide sufficient catharsis to erase the “look of extreme vulnerability, nakedness, [and] openness” that mark people who have lost someone, and “think themselves invisible” (74-75). She comes to realize that the words that haunt her (“And then—gone,” “You’re safe, I’m here,” “For once in your life just let it go”) form a kind of tragic poetry that cannot be analyzed. As Didion states, the difference between “grief as we imagine it and grief as it is” lies in “the unending absence that follows, the void, the very opposite of meaning, the relentless succession of moments during which we will confront the experience of meaninglessness itself” (189). Words cannot fill the void.

And yet, a year and three days after starting this account, she realizes that she does not want to finish it. “The craziness is receding but no clarity is taking its place. I look for resolution and find none” (224). We refuse to “[l]et them become the photograph on the table…the name on the trust accounts” and “keep them dead” (224). We are told to let go in hopes that the ghosts will stop haunting us, but to do this feels more like betrayal.
Didion does not come to a conclusion. She finds no positive affirmation or overarching meaning. We are left with an awareness of the “ordinary instants” that pass uneventfully in our lives as we wait for the world to suddenly shift beneath our feet. Grief shouldn’t have to become self-pity. In the isolation of the void, where we must undo old habits and swallow the mundane discoveries we save for one listening ear, we are left only with ourselves (195). But even in a world where the divide between life and death has been pushed offstage, who are we to banish grief simply because it reminds us of the finitude of our own ordinary days? We can still support each other in the face of that void—to simply “bake a ham,” “drop it by the house,” and “go to the funeral” in solidarity (61). We must open ourselves to grief, if only to remind ourselves that we are never alone.

What Didion has built is a testament to the fragility of our lives, and to our resilience to continue on. We continue to carry these ghosts with us, and we are transformed by keeping them close to our hearts. "Leis go brown, tectonic plates shift, deep currents move, islands vanish, rooms get forgotten” (227). Life changes in an instant. The world moves on.

But memory never has to fade.

For further reading:
-Blue Nights – What could be thought of as Didion’s sequel to The Year of Magical Thinking, recounting the death of her daughter, Quintana.
-The stage adaptation of The Year of Magical Thinking
-Interview with the “young writer” she refuses to talk to on page 168
-Interview with Katie Couric on the memoir and the grieving process

Vivian Lam is a student at Stanford University striving to contribute tangibly to the fields of end of life and palliative care, and the medical humanities. She enjoys running long distance and warbling the same songs in the shower all year long.

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by Vivian Lam

We begin with an image of Sherwin Nuland as a bright-eyed third year medical student, cutting open a dead man’s chest and cupping his heart with bare hands.

After several moments of desperation, the man, James McCarty, roars a death rattle that stops Nuland in his tracks. We look upon a vivid scene of carnage and defeat—Nuland is soaked with sweat and blood, sobbing and “demanding that he live, screaming his name into his left ear as though he could hear me, and weeping all the time with the frustration and sorrow of my failure, his” (7). Dave, the intern on duty, comes into the room and holds Nuland “as if [they] were actors in an old World War II movie.” He patiently recounts the clinical and biological events that exonerate him of guilt, for McCarthy’s “death inevitably beyond [his] control,” and he had done “everything [he] could.” But what Nuland remembers most from his gentle ministrations is a statement that unravels over the course of the book: “Shep, now you know what it’s like to be a doctor” (8).

Nuland’s encounter with McCarthy serves as a microcosm of the recurring themes that arise from his systematic analysis of the multifaceted ways we approach death. In this failed act of heroism, we encounter the collateral damage of high-tech medicine’s pyrrhic war against death and disease, and the indifference and inevitable supremacy of nature. But it in his remorse that we are introduced to the power and comfort derived from understanding why a body fails, identifying its assailant, and redefining what it means to have a “death with dignity” and what it means to hope.


How We Die: Reflections on Life’s Last Chapter, published in 1994, is a critically acclaimed demythologization of process of death. Winner of the National Book Award for Nonfiction, finalist for the Pulitzer Prize, and New York Times Best Seller, How We Die elucidates and renders approachable the “horsemen of death” that haunt our lives: heart failure, aging, Alzheimer’s, stroke, murder, suicide, AIDS, and cancer. Through a seamless integration of narrative with incisive scientific and philosophical analysis, Nuland, a practicing surgeon at Yale originally from the Bronx, draws from history, literature, and his own personal experiences to provide prescient insights on how we can reconcile our relentless scientific conquests with the disappearing “art of medicine,” and to no longer be afraid of ars moriendi—the art of dying.

Following a systematic approach of presenting central and supporting anecdotes that are first explained by revealing the biological underpinnings, then put into context with historical and contemporary practices, How We Die could be likened to a series of grand rounds, electrified with the emotional punch of a particularly inspirational TED Talk. Scientifically, death boils down to a matter of suffocation—“Man is an obligate aerobe,” and so is it that we fall into a permanent expiration as cells and tissues die from oxygen deprivation (118). In the multifarious ways this suffocation can manifest, Nuland transforms our ailments into the “mounted murderers” (264) that the battalions of modern medicine are pitted against—we face the tactical brilliance of AIDS as it patiently “[prepares] for a massive land invasion” (182); the “malevolent” and “immoral” cancer, “juvenile delinquents of cellular society” with “no other purpose than to destroy life” (208). And yet, in spite of the exponential advancements we have made in effective reconnaissance and honed weaponry, pushing the boundaries that nature has set against us, we have not yet been able to gracefully accept defeat. The “laboratory-based doctors” and “clinical warriors,” absorbed by the quest to diagnose, design, and carry out a cure (what Nuland calls “The Riddle), traffic hope to patients who are “less a human being and more a complicated challenge in intensive care” (149) without follow-through. And when failure is imminent, they cut their losses and tend to emotionally and physically disappear, leading often, as Nuland demonstrates from an account about the prolonged dying of his older brother that he himself sanctioned, to tragic consequences. As he reflects on his profession, he summarizes: “The Riddle is the doctor’s lodestone as an applied scientist; it is his albatross as a humane caregiver” (260).

But in the midst of the tragedy of illness and of medical abandonment, Nuland draws attention to the strength of patients and caregivers who have paved their own way towards a “good death.” For, a “good death” is redefined by the act of resolutely standing by the side of a partner lost to the ravages of Alzheimer’s, hosting one final Christmas dinner where cancer is secondary to bonhomie, or forming a “caregiving surround” of a family of friends to mourn another young life taken by AIDS. A “good death” reclaimed by the love and supportive presence that is made possible by the acknowledgement of disease, and the acceptance of death.

Nuland argues that our coveted vision of a “dignified death”—of being surrounded by loved ones in the comfort of one’s own bed, fading painlessly away with enough time to spare for profound parting words—is little more than a dream that makes the reality of dying all the more disappointing. From the lessons of his patients and his own failures, he calls for a personal redefinition of “hope”; for a “resurrection of the family doctor” and the “understanding of a longtime medical friend” (266); for patient empowerment through education, and the clarity that comes with realistic and informed expectations. As Nuland discovered, the key to overcoming The Riddle is to “listen more to the patient, and ask her less to listen to me” (253), to always remember that “[d]eath belongs to the dying and those who love them” (265).
How We Die is a brilliant pioneer of the ongoing movement for death awareness, compassionate care, and informed decision-making, inspiring and serving as a guide for patients and doctors alike. But most of all, How We Die is a memorial—not only for the deaths of the legions lost to disease, tragedy, and the passing of time, but to the lives they have lived, and the legacies they have planted for others to sow. We die “so that others may live,” our contribution to “the triumph of ongoing life” (267). Whatever lot nature deals us, however filled with tragedy our lives come to be, we are gifted with our own invaluable share of time. For, the “greatest dignity to be found in death is the dignity of the life that preceded it. This is a form of hope we can all achieve, and it is the most abiding of all” (242).

As Nuland concludes: “Ars moriendi is ars viviendi: The art of dying is the art of living…Who has lived in dignity, dies in dignity” (268).

For further engagement:
-“How Electroshock Therapy Changed Me” - Nuland’s TED Talk about his history of mental illness, and overcoming crippling depression; a particular TED conference favorite.
-”The extraordinary power of ordinary people” - Another TED Talk by Nuland, on the idea of hope.
-“Terra Incognita” - Paul Kalinithi’s (author of When Breath Becomes Air) eulogy to Nuland.

Vivian Lam is a student at Stanford University striving to contribute tangibly to the fields of end of life and palliative care, and the medical humanities. She enjoys running long distance and warbling the same songs in the shower all year long.

Disclaimer: Links to How We Die are Amazon Affiliate links. A small percentage of any Amazon purchase from this link goes to supporting Pallimed efforts to share news and information about hospice and palliative care. - Ed.