Category: Preparing for Death

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The Day Ram Dass Died

— He taught me to be more curious, present, and self-loving. His final lesson was more surprising.

By Christopher Fiorello

I woke up every thirty minutes the night before Ram Dass died. Stretching my perception through the big divider that separated his study—where I lay on a narrow couch—from his bedroom, I’d count the seconds between the short, ragged breaths churning through his sleep-apnea machine.

Four years later, I still have no idea why I was chosen to watch over him that night. I was at the bottom of the caregiver pecking order when it came to things directly related to Ram Dass’s body. I lacked the size and strength to transfer him from bed to wheelchair, or wheelchair to recliner, on my own; was too much of a novice to help organize his schedule or coördinate with his doctors; and was too unfamiliar to offer intellectual comfort in the rare moments that he wanted to talk. I’d met him ten months earlier, had his voice in my head for just three years. There were people in the house, on Maui, who had known him for more than three decades.

Before arriving, I had no formal medical training, but I had done three weeks of volunteering at a hospice facility in anticipation of coming to the island. Most of it involved moving Kleenex and changing the amount of light in empty rooms. Several times I sat with the dying. It was overwhelming to look at their closed eyes, feeling the heaviness in the room, the sense of something happening or about to happen. I scanned their faces for signs of pain, of fear or bliss, of transcendence. Through the palliative haze of opioids, they were impossible to read. No one was thrashing in pain; no one was smiling, either.

But it somehow buoyed me, being so close to death. The heaviness seemed critically important to my spiritual growth. I imagined myself giving peace to the dying through my presence, and in the process conquering my own fear of leaving life behind.

During my time with Ram Dass, I flitted constantly between self-righteousness and self-pity, one day indulging in grandiose fantasies that I was the heir to his legacy, charged with scattering his ashes, and the next imagining that everyone in the house hated me. The caregivers called it the classroom or the fire—a site of purifying work, a pathway to enlightenment.

My own work, purifying or otherwise, consisted mostly of handling various chores needed to keep a six-bedroom cliffside home with a pool, guesthouse, and two-acre yard going. For the bits that mattered—the scrubbing and the laundry and the cooking—there was a team of cleaners and a rotating cast of chefs. I ended up doing a lot of the rest: separating recycling, washing dishes, and replacing cat-scratched screens. There were three other caregivers in the house, and I was given a modest salary, plus my own room, meals, and shared access to a truck. I was an employee, but most days the house felt like a family, for better or worse.

Still, this was only the second time I’d been asked to spend the night in the study. It was generally perceived as an act of intense devotion: accepting a horrible night’s sleep, on a couch that reeked of cat pee, while facing the prospect of Ram Dass dying on your watch. I hated it, but I was there to care for the guy however it was decided that he needed care.

Most of the deciding was done by a woman affectionately dubbed Dassi Ma, a seventysomething lapsed-Catholic firecracker from Philadelphia. Dassi Ma was Ram Dass’s primary caretaker, and, though she no longer did the more strenuous physical tasks, she was still in command of what he got and when, often more so than Ram Dass himself. He was eighty-eight, and his health had been steadily deteriorating owing to a host of issues, including chronic infections. When I moved to Maui to be near him, in February, 2019, he had almost died the night I arrived. He bounced back, to everyone’s surprise but his own. “It wasn’t time,” I remember him saying in his stoic way, neither relieved nor disappointed. Now he had another spreading infection, and what appeared to be a cracked rib from being transferred to and from his wheelchair.

Ram Dass’s life is the subject of multiple documentaries, an autobiography, and a docuseries in development starring “High Maintenance” ’s Ben Sinclair. He was born Richard Alpert in 1931 to a wealthy Boston family. His pedigree was sterling: a Stanford psychology Ph.D., tenure track at Harvard, visiting professorship at Berkeley. In 1963, after five years at Harvard—much of it spent studying psychedelics with his fellow-psychologist Timothy Leary—he was fired for giving psilocybin mushrooms to an undergraduate.

He bopped around for a few years, often taking obscene amounts of mind-altering substances with Leary at the Hudson Valley estate of his friend Peggy Hitchcock. In 1967, like so many other Westerners of the time, he travelled to India in pursuit of exotic answers to life’s biggest questions. He’d grown disenchanted with the psychedelic world, which had come to seem rotely defined by highs and comedowns. In India, he met a Californian hippie named Kermit Riggs and followed him to a village called Kainchi, in the Himalayan foothills, to meet Riggs’s guru.

The guru was an old, squat man named Neem Karoli Baba. Before long, an enthralled Alpert was reborn as Ram Dass, or roughly “servant of God.” He returned to America later that year, arriving at the airport dressed in white robes and with a long, scraggly beard, and began his career as a spiritual teacher. Most of what he talked about, from 1967 to his death, were the experiences he had with Neem Karoli Baba, whom he called Maharaj-ji (“great king”), and the spiritual beliefs that emerged from those experiences.

One of his main ports of call became death and dying. In 1981, he co-founded the Dying Center, in Santa Fe, an organization that described itself as “the first place specifically created to support and guide its residents to a conscious death.” The center sought, in effect, dying people who wanted to use their death to become spiritually enlightened, and staff members who wanted to use other people’s deaths to achieve the same. Even before the Dying Center took shape, Ram Dass was lecturing on the spirituality of death, its place in the natural order, and the starkly contrasting way that he believed it was perceived in the East. His teachings were rooted in a specific vision of metaphysical reality, as informed by his guru and by the Bhagavad Gita, a sacred Hindu text. Roughly, he believed in nondualism, that there existed an unchanging and absolute entity—the Hindu Brahman, which Ram Dass more frequently called God, the divine, or oneness—from which all material reality came. Included in that reality were souls (something like the Hindu atman), which by their nature were caught in the illusion of their separateness from God, repeating a cycle of birth, suffering, death, and reincarnation until they remembered their true nature as part of the oneness—that is, until they became enlightened.

Death could be a crucial moment for remembering this nonduality, as it was when the “veil of separateness” was thinnest. In his 1971 book, “Be Here Now,” which has sold more than two million copies worldwide, Ram Dass summarizes his views: “You are eternal . . . There is no fear of death because / there is no death / it’s just a transformation / an illusion.”

He often spoke to crowds afraid of dying, repeating that he had “no fear of death.” He sat with people on their deathbeds and talked routinely about the power of “leaving the body,” his efforts to “quiet himself” so that the dying could see where they were in the reincarnation process and do what they could to escape it. His stories were sometimes graphic—people dying prematurely, or dying in tremendous pain—but always tinged with a lightness and humor.

Perhaps Ram Dass’s most memorable remarks about death came not from his own mind but from a woman named Pat Rodegast, who claimed she had channelled a spirit named Emmanuel from 1969 to her death, in 2012. Rodegast was working as a secretary, raising children, and practicing Transcendental Meditation when she began to see a light, which evolved into what she called telepathic auditory guidance. Some of that guidance was captured in three books published in the eighties and nineties, two of which came with forewords from Ram Dass. According to Ram Dass, when he asked Emmanuel what to tell people about death, Emmanuel replied that it was “absolutely safe,” “like taking off a tight shoe.”

I first encountered the voice of Ram Dass in 2016. I was twenty-seven and living in New York, in a Chinatown building that rattled every time an empty box truck drove down First Avenue. Each morning, I tumbled down five flights of sticky stairs and placed one of his talks deep into my ears, letting his distinct blend of scientific erudition and spiritual mysticism carry me across town.

He had a habit of segueing from psychological concepts, like attachment theory and childhood trauma, to cryptic ones, like Emmanuel’s messages and the astral plane, pausing briefly to ask listeners if they could really, truly “hear this.” He seemed to build on the insights of others who had revolutionized end-of-life care in America—thinkers such as the psychiatrist Elisabeth Kübler-Ross—but also spoke in the New Age argot of Alan Watts. I gobbled it all up, feeling my spiritual life deepen exponentially by the day. His lectures made me more prosocial, more anti-capitalist, more curious, and decidedly more self-loving.

This was my second rodeo with spirituality; growing up, a rigid strain of Protestantism had been foisted on me like a chore. In Kansas City, Missouri, I was enveloped by an atmosphere of creationism, tent revivals, and anti-abortion screeds. I still recall standing on a busy street as a six-year-old and holding a sign that read “Before I Formed You in the Womb I Knew You—God.”

The teachings of Ram Dass were nothing like that. They were straight out of the hippie movement, and seemed to license a more liberal, self-directed search for meaning. As the grind and filth of Manhattan wore me down, Ram Dass’s voice became a salve, a way to “wake up to the illusion of our separateness.” I turned to his work again and again—to ease my loneliness when, walking down the street, droves of people moved around me like I was a light post, or to arrogantly tell my ex-girlfriend that we would always be “together,” even though I’d already dumped her.

After a couple of years, I learned that I could actually meet Ram Dass, for free, by signing up for one of his “Heart-to-Hearts”—a one-on-one, hour-long Skype call he offered as a sort of public service. When my time came, and the man appeared onscreen, I was stunned into silence. I had thought of him as a spry, ethereal figure who existed only in decades-old recordings. This Ram Dass was very old and lived with fairly advanced aphasia, a side effect of a major stroke he’d had in 1997. His speech was slow—in our full hour, he said roughly sixty words—but not at all ponderous. I thought it gave him a mystical quality.

There was no format to the session; Ram Dass just smiled his winning smile and listened. At one point, after I’d nervously overshared, he told me, “You take yourself pretty seriously.” That struck me as profound, at least at the time, but what endured was more feeling than words. It seemed he had arrived at a place from which he could find genuine love for strangers like me. It didn’t strike me as brand positioning, or as a form of ego; I didn’t think he loved me in the sense that he wanted to be close, or even that he cared whether we got to know each other. I just believed he saw me as another soul, and that, in his view, made me worthy of kindness.

By then, I was walking around New York, trying desperately to feel connected to anything. I wanted what Ram Dass had. So I left the city, intending, among other things, to get him to show me how to have it.

The friend I’d discovered Ram Dass with had already moved to Neem Karoli Baba’s temple, in Taos, New Mexico. I visited him for a fortnight of cooking group meals, wandering through the snowy high desert, and hobnobbing with Maharaj-ji zealots, including one white teen-ager who insisted that he was the reincarnation of Krishna, one of Hinduism’s most revered avatars. Like the young Krishna of lore, he would steal away to the temple pantry to eat pure butter until caught.

Some of this evoked my childhood church, where kids compared how quickly they could transition into speaking in tongues, or flexed the depth of their personal relationship with Jesus while leading a collective prayer. But this was my first encounter with Neem Karoli Baba devotees; I figured followers would be a bit more mellow the farther I got from his temple. Toward the end of my stay, I met a longtime friend of Ram Dass. He saw that I was eager to do volunteer work—known as seva, Sanskrit for “service”—so, when he learned of my intent to find Ram Dass on Maui, he offered to put in a good word to Dassi Ma.

That recommendation made the seemingly impossible possible. People of all ages came to the island to be near Ram Dass. Some found their way into the group texts for arranging kirtan—living-room chanting sessions at Ram Dass’s house—or beach excursions. A few found opportunities to be useful around the house, or made friends with one of the live-in caregivers, enabling them to drop by every week or so. But to be offered to help care for Ram Dass, for pay, as a virtual nobody, was exceptionally rare.

Upon arriving at the house, I found it shot through with the same quasi-religious fervor I had seen at the temple. I was quickly intercepted by another caregiver and taken to a lean-to, in a nearby pasture, so that I could silently meditate with prayer beads. It was incredibly humid, and I got annihilated by mosquitoes. I returned to the house to find a living room packed with people chanting—mostly the Hanuman Chalisa, a devotional hymn that features verses like “With the lustre of your vast sway, you are propitiated all over the universe.” A collective effervescence filled the room, and I joined along, staring at hundreds of statuettes of religious figures while fighting back the sense that I was in church.

After more than an hour of chanting, we milled about, greeting one another over chai and snacks. Attendees swapped stories of Maharaj-ji’s miracles, told me that my presence must be part of his plan, sat smiling at Ram Dass’s feet, their hands over their hearts. During my year on Maui, Ram Dass’s foundation led retreats at a local resort, where hundreds of people would gather for spiritual talks and chanting. Inevitably, someone at these events would look at me with confusion or pity when I told them my name was Christopher. “He hasn’t given you a name yet?” the person would ask. Ram Dass often bestowed a Hindu name on people: Lakshman, Govinda, Hari, Devi. I was fine with Christopher.

But there were other moments, informal and fleeting, when I witnessed the mixture of play and profundity that first drew me to Ram Dass. One autumn morning, two other caregivers and I were helping him get through his daily routine—brushing teeth and hair, putting on clothes and hearing aids, making the bed—when I turned on Doja Cat’s “Go to Town,” a song I later learned was about cunnilingus. I cranked the volume, and the four of us started dancing with illicit glee. One caregiver jumped on the bed, another swung from the divider between the bedroom and the study, and Ram Dass waved his one mobile hand with bright eyes and a rascally smile.

Another day, I was alone with Ram Dass, helping him pick out a shirt. Though I spent nearly all my time in the house, I could count the hours we had been alone together on two hands, and most of them had involved food and drink, or foot massages, ostensibly to relieve the pain that he felt from diabetic neuropathy. On this day, the house was recovering from Ram Dass having been denied psilocybin owing to his health. I felt sorrow for him; the drug was, after all, the beginning of his spiritual journey more than five decades prior. I asked him if the house ever felt like a prison. A full minute of silence passed, with me standing over him in his walk-in closet. Eventually, he tapped his temple and said, “This is the prison.”

When morning broke on December 22, 2019, and Ram Dass was still alive, I allowed myself a moment of relief. Dassi Ma came up, looking short on sleep, and took his vitals. They were horrible. We snapped into action, trying to comfort Ram Dass until one of his doctors arrived.

The infection had pooled fluid in his lungs, which made every breath a burden. Wet, rattling half-breaths were punctuated by coughs of bloody mucus. He looked wrecked, but still managed a weak smile when his Chinese-medicine doctor told a joke at his bedside.

At some point, Dassi Ma and the doctor began talking in the study; other caregivers were on an oxygen-tank-and-essentials supply run. I was on one side of Ram Dass’s bed; on the other was his longtime co-author Rameshwar Das, a friend since Kainchi. Then Ram Dass started choking.

It wasn’t that different from any of the other horrible breaths he’d taken that morning, except that he just couldn’t breathe it. When he realized this, he turned to me with a look that haunts me even now: light eyes wide as quarters, mouth open, lips a bit rounded. I immediately panicked, calling for Dassi Ma and trying to get his adjustable bed as upright as possible so that he could clear his throat. Then, when that didn’t seem upright enough, I frantically tried to lug his torso up so that his head could hang over his waist; perhaps he could vomit his throat clear.

Thirty seconds had passed since he first lost his breath. Somewhere from near his feet, the doctor snapped at me: “You have to calm down!” It jolted me into an awareness that Ram Dass was dying, right there. Perhaps it did the same for Dassi Ma, because she sprang for the study, returned with a large framed photo of Neem Karoli Baba, and commanded him to focus. “Ram Dass! Maharaj-ji! Maharaj-ji!” she said, placing the photo at the foot of the bed. She told him that she loved him, that he could go. I told him that I loved him. And then Ram Dass stopped trying to breathe.

I was the only person to leave the room. Stumbling into the study, I picked up my phone, hands quivering, and sent word to the other caregivers: “RD’s dying imminently. Like within the next couple of minutes.”

The wind was screaming outside. On Maui’s North Shore, it wasn’t unusual for it to reach thirty, forty knots, rattling the windows and throwing palm fronds across the lawn. That day, it had blown from early in the morning, under a tightly woven blanket of gray clouds. Sitting in the study, I watched it bend the trees, felt the violence of it, indiscriminate.

Ram Dass believed that fear kept us from recognizing our interconnection to all things. “Change generates fear; fear generates contraction; contraction generates prejudice, bigotry, and ultimately violence,” he said. In his teachings, he often placed fear and love on opposing sides of the human experience. Fear was the by-product of the ego; love was the by-product of the soul that remained pure, in the moment, especially at the time of death. “When we are fully present,” Ram Dass wrote, “there is no anticipatory fear or anxiety because we are just here and now, not in the future.”

And yet this binary is precisely what made watching him die so disorienting. I’ve no idea what Ram Dass felt in those final moments, what he could see or hear. I don’t even really know if that was fear I saw in his eyes, though it certainly looked like it. Perhaps it was surprise or another sensation entirely, the rush of emptiness before a huge plunge into something tremendous.

Whatever it was, its existence seemed largely absent from his teachings. There were times when he acknowledged the pain and coarse brutality of death. In his book “Still Here” (2000), he writes:

Dying is often not easy. the stoppage of circulation and starving of the heart muscle. the inadequate transport of oxygen to tissues, the failure of organs. Where can we hope to stand in our own consciousness during such traumatic conditions, in order to die with clarity and grace?

Yet the emphasis he placed, over decades of lectures, on the importance of grace during death made so little space for terror—for how fear could coexist with presence, and even with love. In the minutes after his passing, the chasm between how he died and how I thought he was supposed to die reminded me of the betrayal I’d felt when, at sixteen, I flouted my mother’s and pastor’s admonitions and stopped asking God for protection, only to discover that a similar slew of terrible and wonderful things still happened to me.

In the house, too, marching through three days of death rituals before Ram Dass’s body was removed, I felt my spirituality slip its moorings. Late on the second night, his body lay on ice in his study—a rite he’d specifically requested, hoping that it would help those around him transcend their fear. I sat on the floor and peered up at his face through candlelight, his skin whitish blue and gaunt, his mouth slightly agape. I waited for grace, for him to speak reassuringly from some other plane of reality. Instead, I was taken back to our final moments together, where fear sutured me to each passing second. Not fear of the past or some uncertain future, but fear of the vast, strange intensity of what is.

Complete Article ↪HERE↩!

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Palliative and hospice care in hospitals and clinics

— The good, the bad, and the ugly

By Earl Stewart, Jr., MD & Miguel Villagra, MD

I walk into the patient’s hospital room during evening rounds. He looks pale and tired, having recently completed a round of chemotherapy for his stage IV pancreatic cancer. His wife is at the bedside, scared and concerned about her husband’s rapid decline. I sit down to discuss goals of care when the patient immediately says, “I can’t do this anymore.” His wife responds immediately to the patient: “Of course you can.” As I delve deeper into the patient’s constant pain and discomfort, the conversation naturally shifts toward a comfort care-focused approach. After 55 minutes at the bedside, both patient and wife agree to further discuss this with the palliative care team. Ultimately, the medical team decided to transition the patient to hospice care.

Similar examples exist in outpatient practice. Take, for example, the 56-year-old female patient with metastatic non-small cell lung cancer who would clearly benefit from early institution of palliative care given the known mortality benefit. When you see her time and again, she engages in candid discussions with you as her physician that she would rather let “nature take its course.” She doesn’t want chemotherapy. She refused radiation. She continues to smoke. She doesn’t want her family to know, and palliative care options, though previously discussed with her, remain out of the question for her.

These are realistic examples from daily practice that present an interesting quagmire to the practicing physician as he or she treads the lines of patient autonomy and applies the evidence of what has been shown to clearly help a patient feel and live better, especially those with terminal illnesses. Tools exist to aid with these difficult conversations, and awareness among the patient, health care professionals, and family members makes all the difference in having these critical discussions. It’s often rather difficult to accept when you are taught to do something but come to the realization that sometimes doing nothing is what a patient prefers. In that moment, you realize that doing nothing means doing everything.

Sometimes practicing hospital medicine is a battle between life and death. Outpatient practice, too, is rife with such battles between the material and immaterial. Palliative and hospice care, though different, offer hope and comfort in some cases. Together, these medical disciplines not only alleviate physical suffering but also, through a conjoined care model, address the emotional and spiritual needs of patients and their families, guiding them through one of life’s most difficult journeys.

Palliative care is a specialized approach that aims to alleviate physical symptoms, manage pain effectively, and reduce the emotional and psychological distress experienced by individuals facing incurable illnesses, irrespective of their specific diagnosis. Palliative care is designed to improve the quality of life for both patients and their families. At the center of this is holistic care. A patient qualifies for hospice services if he or she has an illness that limits his or her life expectancy to six months or less.

Transitioning a patient from palliative care to hospice care is a crucial step that signifies a shift toward comfort-focused end-of-life treatment. Clear communication, compassionate support, and honoring patient and family preferences play critical roles in improving quality of life, increasing satisfaction with care, and enhancing emotional well-being during this transition. This process ultimately hinges on doing what is in the patient’s best interest and ensuring a death with dignity.

Physicians navigating palliative and hospice care face a unique set of emotional and professional challenges, such as handling end-of-life conversations with families to determine a patient’s goals of care, managing pain and symptom control effectively, and addressing spiritual distress in patients. However, within these challenges, there is a profound reward in making a significant difference in the final stages of a patient’s life. It has been previously heralded that caring for the dying patient is indeed a rewarding challenge given the intricacies it presents and doing so is crucially important is physician education. We now know that not only does education matter for physicians in these veins of practice, but it matters for nurses as well.

In palliative and hospice care, an interdisciplinary approach involves physicians overseeing medical decisions, nurses providing direct patient care and symptom management, social workers addressing psychosocial needs, chaplains offering spiritual support, and pharmacists ensuring proper medication management. Each team member contributes his or her expertise to create a comprehensive care plan that supports the physical, spiritual, and psychosocial well-being of the patient, highlighting the power of collaboration in providing holistic, patient-centered care.

Physicians navigating the complexities of palliative and hospice care must adopt practical strategies for effective patient management and compassionate support. Key strategies include fostering open communication with patients and their families, setting realistic expectations, and managing one’s own emotional well-being. Active listening, providing clear and empathic explanations, and involving the entire care team in medical decision-making are crucial for effective patient care.

Though we understand more as a physician community about employing palliative and hospice services for our patients when apropos to providing evidenced-based care, we are aware there is still work to be done to better the delivery of this care.

It has been documented that work is needed to further guide the integration of the family meeting specifically into oncology practice.

Recent data have shown how the institution of information technology and so-called “e-health” methods can be very helpful in individualizing care and extending palliative care services to patients.

We will all have these conversations. We will see patients like these. We charge all physicians to embrace the tenets of palliative care and hospice when appropriate for their patients and to learn more about the services offered in their hospitals, health systems, and practice structures to provide for the most optimal health outcomes.

Complete Article ↪HERE↩!

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Ending cancer treatment to focus on living

Alicia Mathlin

Alicia Mathlin felt like her body was no longer hers after several rounds of debilitating cancer treatment — so she decided to stop and focus on living her life. Matt Galloway talks to Mathlin about that decision and asks medical experts about the push for ‘common-sense oncology,’ which weighs the pros and cons of certain treatments against a patient’s quality of life.

Matt Galloway cuts through a sea of choice to bring you stories that transcend the news cycle and expand your worldview. It’s a meeting place of perspectives with a fresh take on issues that affect Canadians today.

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Does Morphine Speed Up Death At The End Of Life?

— What We Know

By Jennifer Anandanayagam

Morphine, an opioid medicine that is prescribed for pain relief, is not without controversy. When there are strong concerns about substance abuse and addiction to the narcotic, people often wonder things like “Is it safe to take morphine?” or “How long does morphine typically stay in your system?”

If you were to talk to hospice care workers, you’d probably hear that this powerful pain relief medication also gets a bad rap in their world. One of the common concerns is if giving morphine to your dying loved actually brings about their death sooner.

According to palliative care professionals, when proper dosage and timeliness of administration are followed, there is no basis for this fear. In fact, according to Hospice of the Chesapeake‘s Director of Education and Emergency Management, Elisabeth Smith, giving the right amount of morphine to someone who’s having trouble breathing might actually help them breathe better. For someone with breathing difficulty brought on by conditions like terminal lung disease, “it can feel like you’re drowning, gasping for air,” explained Smith. “Morphine opens the blood vessels allowing more blood circulation within the respiratory system. This makes it easier for the lungs to get the bad gases out and the good gases in. The patient becomes calm, their breathing slows down.”

Morphine doesn’t speed up death

It’s easy to see how the notion of morphine bringing death sooner to someone who’s dying came about. We can blame creative outlets like movies and books and also the lived experiences of some people who report seeing their loved ones’ lives slip away while on the opioid.

But morphine, when administered correctly, can bring a lot of relief and improve the end-of-life experience of someone, mainly because it blocks pain signals and helps with a lot of distressing sensations someone might be feeling in the final moments before death (per Crossroads Hospice & Palliative Care), like shortness of breath, pain, restlessness, and agitation.

Palliative care professionals are well-versed in how to start, sustain, and increase (when needed) morphine dosage according to the requirements and comfort levels of their patients (per Canadian Virtual Hospice). When someone is first put on the narcotic, the dose is very low and this dosage is maintained until the person gets used to it. Only a large dose can prove harmful (a fatal overdose might require 200 milligrams). That being said, morphine, like other pain medications, comes with its own set of side effects like drowsiness, digestive issues, stomach cramps, and weight loss (per Mayo Clinic). As explained by Elisabeth Smith from Hospice of the Chesapeake, sometimes suffering can prolong death too and it can look like the person passed away sooner when morphine was administered to them, simply because their discomfort was taken away and death was allowed to come in its own time.

Should you be concerned about administering morphine?

Ultimately, no one can answer that question but you, but hospice care workers urge loved ones to be correctly informed of the intricacies of why morphine is given in the first place and how it’s done in a professional setting. 

Pain is part of the dying process and if pain medications such as morphine can relieve some of the suffering, it might be one of the kindest things you can do for your loved one. You might be giving them a little more independence to be able to eat and drink without discomfort, sleep better, and even maintain better cognitive capabilities (per Vitas Healthcare). Ask questions from healthcare professionals and have them explain what the drug does exactly. Sometimes, having the right knowledge can assuage some of your fears. 

Dr. Daniel Lopez-Tan from Legacy Hospice shared that the idea that morphine speeds up death could have arisen because the opioid is commonly associated with end-of-life care. “The patient is dying of other causes and morphine only softens the symptoms of the last moments of life … One of the effects of morphine called respiratory depression does not occur with small, controlled doses of short-acting opioids, especially when under the supervision of a healthcare professional,” added the doctor.

Complete Article ↪HERE↩!

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I’m a death doula

– These are the most common regrets people have before they die

From staying in sexless relationships to putting off downsizing, these are the issues that come up time and time again

By Sadhbh O’Sullivan

There are few as well acquainted with the dying, and their regrets, as death doulas. Also known as end-of-life doulas, they provide support to people through terminal or life-limiting illnesses by improving their quality of life, and death.

This encompasses everything from helping with logistics to providing emotional support to those at the end of life and their loved ones.

i spoke to three death doulas to understand the biggest regrets of the dying, the living who love them, and steps we could take to avoid those same regrets and have a better end of life.

Staying in unhappy (and sexless) relationships

Emma Clare, who is a chartered psychologist and death doula, says that the most common, though unspoken, regret she hears is about relationships.

“I often hear people say that they wish they’d left either unfulfilling or unhappy relationships sooner. A lot of people have regrets about spending a large part of their life in situations that didn’t feel true to themselves or have any fulfilment.”

She says when we’re confronting death, we feel a lack of intimacy and closeness acutely – including sexual intimacy.

“As humans we look for intimacy and that doesn’t go away because we’re dying. If anything, it increases because people are aware they have a limited time left and they want to have that connection with other people.”

Not downsizing or decluttering

“We all know we’re going to die, but we just put it to the side, even with a terminal diagnosis,” says Jane Depledge, a doula based in North Powys, Wales. When patients are told that treatment is going to stop, that lack of preparation “hits them”, she says. Getting a will in place, transferring over health insurance, or discussing their wishes are all simple things that we don’t want to face, but will feel better for it.

Emma Clare adds that this includes very practical decisions.

“People wish they’d downsized their home earlier and cleared out their stuff, and now they’re aware their often adult children are going to have to deal with that and feel a big sense of guilt. That means regret from the family too: they’re then left sorting that out and haven’t had the conversation about what was and wasn’t treasured and should be kept.”

Being in hospital instead of at home

“People often don’t realise they have choices”, says Depledge, so when a person is dying they panic and send them to hospital. Though for some people hospital care is essential, she says it is always worth asking and looking into ways their loved one could die at home.

Not being prepared

The emotional and physical burden of caring for someone at the end of life can take its toll on both the carer and the patient, who may feel huge guilt at being ‘a burden’. People often regret being inadequately prepared for everything that needs juggling, and not realising what support they can get.

“Carers can claim immediate Government grants to care for someone who is dying,” explains Depledge. “Knowing that could have enabled someone to take time off work or give up work to care for and be with a loved one.”

Not being able to say goodbye to friends

When a person is dying, they tend to want to surround themself with the things and people they love most – but so often, they are lonely, says Depledge.

“I think a lot of people avoid visiting people when they get a terminal diagnosis because they worry they don’t know what to say,” she explains. “But actually I hear a lot of upset from the people who are dying, saying that they feel like their friends have gone quiet or disappeared and they feel very lonely. And that’s needlessly lonely because at the funeral there are lots of people there.”

Not saying how you really felt

Amanda Waring, a death doula working in West Sussex says that the biggest regret she comes across is from people who feel they didn’t “heal their relationship, or speak frankly”.

“Regret stems from a lack of honesty. This is true even for exceptionally difficult conversations where someone has wronged the other and the only catharsis is if you bring it into the open and it takes a lot of courage.”

She says this can range from apologising for harsh words spoken at a bedside, to being honest about deeper rooted, historical conflicts, to sharing feelings of love and pride that were perhaps not made clear before.

“Bravely speaking up and trusting your gut is the key to avoiding all regrets really,” adds Emma Clare.

Complete Article ↪HERE↩!

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Incurable but not hopeless

— How hope shapes patients’ awareness of their advanced cancer prognosis

Nurturing hope among patients with cancer and their caregivers is possible and includes coping strategies and exploring realistic goals.

By &

Hope is defined as the expectation of achieving a future good. Patients with cancer, whether it is curable or not, prioritize cure as their highest hope.

Patients with incurable cancer wish to be informed about their disease and its treatment, but also need to maintain hope. This inner conflict can impact how they process information about their prognosis.

Prognostic awareness

Physicians are ethically obligated to inform patients about their prognosis so that patients can make cancer treatment decisions that are consistent with their values. When oncologists talk to patients about prognosis, they tend to talk about the extent of the disease (localized or metastatic), the goal of the treatment (curative or palliative) and the estimated survival (short months or many years).

Communication about prognosis can be challenging due to physician factors such as skill in discussing bad news, and patient factors such as denial. Some patients with incurable cancer, who are aware of their prognosis but haven’t accepted it, will say the treatment goal is cure.

Previous research indicates that less than half of patients with incurable cancer are aware of their prognosis. This is often attributed to a failure of communication.

But are patients truly unaware, or are they aware and not accepting of their prognosis? If inaccurate prognostic awareness is due to denial in spite of adequate communication from the oncologist, then interventions to improve communication may be ineffective, misguided or even harmful.

Patients with incurable cancer are more likely to receive end-of-life care concordant with their preferences when they have accurate prognostic awareness. Inaccurate prognostic awareness can lead to conflicting treatment decision-making between patients and oncologists, delayed referral to palliative care and more aggressive care at the end of life.

In a study of patients with advanced lung cancer, those who received early palliative care and had accurate prognostic awareness were more likely not to choose intravenous chemotherapy in the last two months of life, which would have been futile and worsened the quality of their end-of-life care.

How prognostic awareness is measured

Measuring prognostic awareness in patients is challenging because their responses may reflect their hopes rather than their true beliefs. In a recent publication in the Journal of the National Cancer Institute, our research team synthesized data from 52 studies measuring prognostic awareness in patients with advanced cancer.

In the majority of studies, prognostic awareness was conceptualized as a binary entity: patients were asked if their cancer was curable, and their responses were coded as either accurate prognostic awareness (patients knew their cancer was incurable and responded that it was incurable) or inaccurate prognostic awareness (they thought it was curable and responded that it was curable).

A few studies included in our review improved upon the binary conceptualization by incorporating hope in the assessment of prognostic awareness.

These studies asked patients about their belief and their doctor’s belief about prognosis and found that about a third of patients will hold onto hope for a cure (responding that they believe their cancer is curable), even when acknowledging that their doctors were treating them with palliative intent. This discordance was attributed to poor coping.

The role of hope

Hope is a recognized coping strategy in patients with cancer. However, “false” hope may have detrimental effects. Patients may refuse to believe their prognosis and demand aggressive treatments that may cause more harm than benefit.

In the context of advanced cancer, the relationship between hope and hopelessness is balanced by acceptance, which can re-direct hope to new goals beyond cure, such as hope for connection with others and enjoyment of daily pleasures.

Nurturing hope among patients with cancer and their caregivers is possible and includes coping strategies focusing on what can be done (such as control of symptoms) and exploring realistic goals such as dignity and intimacy. Family and spirituality play an important role in supporting patient hope.

Incorporating patient hope into prognostic awareness

We improved upon the binary conceptualization of measuring prognostic awareness by incorporating patient hope, creating a trinary concept: patients who are aware and accepting of their prognosis; aware and not accepting; or truly unaware.

We propose that patients who are aware and accepting should be offered psychological supports to address any negative effects on mood; those who are aware and not accepting should be offered adaptive coping strategies to support their evolving prognostic awareness; and those who are truly unaware will benefit from interventions such as decision-aids and communication training. Early palliative care consultation may be beneficial at each stage of prognostic awareness.

This trinary conceptualization may guide future research to improve our understanding of the impact of hope in the setting of serious illness and help patients receive the right supports in their cancer journey.

Complete Article ↪HERE↩!

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Understanding Hospice Home Care

— A Complete Guide

Navigating the later phases of a loved one’s life may be an extremely emotional and difficult experience. During these difficult times, hospice home care arises as a source of comfort and support, providing a compassionate alternative to typical hospital medical treatment. This specialist care focuses on improving the quality of life for those in the final stages of a terminal illness by giving them the dignity, respect, and peace they deserve at home.

The Essentials of Hospice Home Care

Hospice home care exemplifies a compassionate approach to end-of-life care, providing a beacon of comfort and dignity to those in their final stages of life. Unlike traditional medical treatments geared at curing diseases, hospice care focuses on quality of life, providing comfort and support to both patients and their families. This comprehensive care paradigm is holistic, addressing patients’ psychological, social, and spiritual needs as well as the physical symptoms of their sickness.

At the heart of hospice home care is the dedication to respecting a patient’s choices, allowing them to spend their final days surrounded by loved ones in the familiar comfort of their own home. Pain treatment is an important part of this therapeutic method. Expertly trained healthcare experts work diligently to manage symptoms and reduce discomfort, allowing patients to live as fully and comfortably as possible.

Beyond physical care, hospice home care offers emotional and psychological assistance. Hospice staff provide counseling and grief assistance because they understand that patients and their families are going through one of the most difficult times of their lives. This guarantees that families are not alone in their journey, giving them a shoulder to lean on both during and after the patient’s life.

Spiritual care is also an important component of hospice home care, allowing patients and their families to examine life’s core concerns, make peace with unresolved issues, and, if applicable, strengthen their spiritual connections. This component of treatment is tailored to the individual’s beliefs and desires, with the goal of providing peace and meaning to patients and their loved ones during this momentous life experience.

Hospice care teams are multidisciplinary, made up of doctors, nurses, social workers, chaplains, therapists, and trained volunteers. Each member contributes their knowledge to build a support network that surrounds the patient and their family with care, love, and understanding. This multidisciplinary approach assures that every imaginable need—whether physical, emotional, or spiritual—is met.

In essence, hospice home care represents a paradigm shift in how we see the end of life. It is about appreciating the importance of every minute and allowing patients to spend time with loved ones, reflect on their life, and transition quietly. Hospice home care helps to reimagine the final chapter of life as one of love, respect, and compassion, rather than despair.

Who Can Benefit from Hospice Home Care?

Hospice care is designed for patients who are facing the end stages of a terminal illness, with a life expectancy of six months or less if the disease follows its usual course. However, it’s not just for the patients; hospice care also significantly benefits the families and caregivers by providing them with educational resources, emotional support, and respite care, helping them navigate through their grief and the caregiving process.

The Core Services Offered

The hospice care team typically includes doctors, nurses, social workers, spiritual advisors, counselors, and trained volunteers. They work together to tailor a care plan that meets the individual needs of each patient and family, which can include:

  • Pain and symptom management: Focusing on alleviating symptoms and ensuring the patient’s comfort.
  • Emotional and psychological support: Addressing the emotional, psychological, and spiritual needs of patients and their families.
  • Companionship and daily care assistance: Helping with daily activities and providing companionship to reduce feelings of isolation and anxiety.
  • Bereavement support: Offering grief counseling and support groups for families before and after their loved one’s passing.

How to Choose a Hospice Home Care Provider

Selecting the right hospice care provider is crucial. It involves considering factors such as the provider’s reputation, the quality of care, the availability of services, and the level of communication and support offered to families. It’s important to meet with several providers, ask questions, and choose one that aligns with the patient’s needs and family values.

The Impact of Hospice Home Care

The importance of hospice home care to patients and their families cannot be emphasized. This approach to end-of-life care has a significant impact on the quality of patients’ final days because it allows them to remain in the familiar and pleasant environment of their own homes. The environment has a significant impact on a person’s well-being, particularly throughout the final stages of life. Being at home rather than in a hospital allows patients to be surrounded by personal memories, things, and the people they care about, which can considerably reduce the emotional load of facing a terminal illness.

Hospice services provide patients with specialized care that addresses their physical, emotional, and spiritual needs. Pain and symptom control are prioritized to allow patients to interact with their relatives and enjoy their remaining time as comfortably as possible. This level of care empowers patients by offering them a sense of control over their lives and the dignity to choose their own treatment and how they want to spend their final days.

Navigating End-of-Life Care with Compassion and Dignity

Families benefit greatly from the extensive support that hospice home care offers. Going through a loved one’s end-of-life process can be emotionally and physically draining. Hospice care teams do more than just attend to the patient; they also assist families with counseling, respite care, and information about what to expect. This assistance is crucial in guiding families through the complexity of sorrow, loss, and the practical aspects of caring. It also allows the family to focus on being present with their loved one rather than being distracted by caregiving or decision-making.

Hospice home care provides significant support to families, which benefits them greatly. Going through a loved one’s end-of-life care can be both emotionally and physically taxing. Hospice care teams do more than just look after the patient; they also provide families with counseling, respite care, and information on what to expect. This help is critical in guiding families through the complexities of grief, loss, and the practical responsibilities of caregiving. It also enables the family to concentrate on being with their loved one rather than being distracted by caregiving or decision-making.

 Component of hospice care cannot be overlooked. Families often find themselves in uncharted territory when a loved one enters hospice care. The hospice team’s role in educating families about what to expect, how to manage symptoms, and how to cope with grief is an essential service that can demystify the dying process and alleviate fears.

In essence, hospice home care profoundly impacts both patients and their families by providing a holistic approach to end-of-life care. It ensures that patients can live their final days with dignity and comfort, surrounded by love, while offering families the support, education, and guidance needed to navigate this challenging journey with grace. This model of care not only addresses the physical symptoms of the patient but also nurtures the emotional and spiritual well-being of everyone involved, making the inevitable transition a shared, supported, and deeply human experience.

Hospice home care displays the power of compassion and dignity in the face of life’s most challenging challenges. Hospice care focuses on comfort and quality of life, guiding patients and families through the end-of-life process with dignity and support. If you or a loved one are considering hospice care, remember that it is a decision that prioritizes love, dignity, and comfort during the most difficult times.