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I'm A Death Doula. Here's What I've Learned About The End Of Life.
I'm A Death Doula. Here's What I've Learned About The End Of Life.

Yahoo

time06-07-2025

  • Health
  • Yahoo

I'm A Death Doula. Here's What I've Learned About The End Of Life.

On a cloudy Friday morning, while idling in Dallas traffic, I noticed a new billboard for a nearby children's hospital. I couldn't ignore the irony of seeing a mother holding her newborn baby on the sign while on my way to visit patients who were close to dying. As a death doula (also known as an end-of-life doula), I spend time with adults in hospice who are in their final weeks, days or hours. It is one of the most vulnerable, gut-wrenching times of their lives and their family's lives as well. Many people assume that being around those transitioning to death and their loved ones who are already grieving their pending loss is the perfect recipe for depression and despair. Instead, sitting at the bedside with hospice patients inspires me to make the most of each moment in my own life and makes me more aware of my own mortality. Becoming a death doula has taught me about what to expect at the end of life and given me the opportunity to help others do the same. Four years ago, my father was discharged from a Midwest hospital to home hospice care. As he lay in the red metal hospital bed placed in the middle of his family room, the nurse pulled a bottle of morphine out of her bag. She explained its purpose and how much to give him every three hours. My mind raced: Isn't this a medical professional's job? Doesn't she realize I don't know what I'm doing? What if I give him a dose and he stops breathing within seconds? I closed my eyes and tried to control my breathing. 'Let us know if you need anything,' she said on her way out. 'There's a hospice nurse on call 24/7.' On my dad's third night home, I spent the evening sitting alongside his bed, my 90-year-old mom in a recliner opposite me. At midnight, a sound in his throat, like rocks tumbling, grew louder. I called the hospice nurse to ask what I could give my father to help him breathe easier. She offered to come to my dad's house, but she was eight months pregnant and an hour away. 'You can do this,' she said, her confidence in my abilities stronger than mine. I measured a dropperful of medication to the nurse's specifications, gently pulled back the side of my dad's mouth and squeezed the bulb until the liquid was gone. At 7:30 that morning, I went upstairs to call my husband while my mom went to the kitchen for a glass of water. When I came back, my mom was standing by his bed. 'I think he's gone,' she said. My dad had waited for us to leave the room to die. The helplessness I felt at not knowing whether I was keeping my father comfortable during his final hours replayed in my mind like a horror movie. Guilt consumed me for missing his final moments. The following year, wanting a better understanding of my father's passing and of death in general, I researched the role of a death doula. Six months later, I enrolled in an end-of-life doula course. When I shared my plans with my family, I understood their concern about how my new role working with hospice patients would have a negative effect on me. But I wanted to make a difference by providing the knowledge, support and insight I wish I'd had before my father died. Around the same time I completed my doula training, my 80-year-old neighbor died, and I adopted her 8-year-old dog, Gaia. The calm husky rolled on her back and welcomed belly rubs from neighbors during our twice-daily walks. She didn't flinch when a toddler rubbed her ears or rested her head on the sweet pup's side. Judging by Gaia's temperament, I knew she would make the perfect therapy dog. After four training sessions — she already had a few basic skills — we tested to become a therapy animal team. We passed, and months later, I met with hospice patients with Gaia by my side. Last spring, while spending time with a man in his 80s, with his wife and two sons at his side, I heard a familiar gurgling sound, the same one my father made during his final hours. 'I know it sounds as if he's in pain, but he's not,' I told one of the sons. 'Please keep telling me that,' he said. I explained that his father wasn't able to clear secretions from his throat or airway, which produced a rattling sound. I understood his concern and recognized the fear in his eyes. When I was caring for my dad, I assumed he was choking. At the time, I didn't know that the unsettling noise was a natural part of the dying process. On a recent Friday, Gaia and I entered a patient's room that was quieter than the chapel two floors down. 'Have you been talking to your mom?' I asked the family who had gathered around her bed. They were surprised to learn that their mother could hear them. The daughter looked at me and then at her two siblings, her cheeks flushed. 'I guess we need to watch what we say.' They didn't know that hearing is generally the last sense to go. The following week, I met a patient's wife and sister-in-law sitting on either side of a man's bed. They both looked exhausted. 'We don't want to go home in case he passes away,' his wife said as she petted Gaia. One of the most surprising things I learned during my doula training is how common it is for patients to wait for their loved ones to leave the room so they won't witness them taking their last breath. I don't think most people expect that. On the other hand, some hold on until an unresolved issue is settled. Others wait as long as possible for a loved one to visit them one last time. My doula training and working with dying patients has prompted me to consider my own end-of-life issues and wishes: How do I want to be buried? Do I want to die at home or in a hospice facility? Do I want music or an over-the-top party at my celebration of life? (I'd like both.) I've compiled a notebook with details about my bank accounts, investments, trust, medical power of attorney and all the information my family will need when I'm gone. I also have an electronic version. Of course, I hope my kids and my husband don't have to refer to any of the documents for decades, but it's comforting to know that I'm taking a burden off my family. For years, I avoided talking about death, even drawing on my mom's superstitious ways — she's convinced that discussing end-of-life issues will summon the Grim Reaper. Being a death doula has changed my view of death — understanding what happens at the end of life has reduced my fear of dying. Meeting patients with less than six months to live has inspired me to focus on life, using their limited time left as a reminder not to take one minute on Earth for granted. I can't change my father's final hours or the desperation I felt not knowing the best way to care for him. At the same time, I'm grateful that I could be with him at his end of life. My training and work as a death doula, along with my personal experience with my father, gives me valuable insight I share with hospice patients and their families. When I meet others in a position similar to the one I was in, I strive to remove the anxiety and mystery around the inevitable. More importantly, I take comfort in knowing that as their loved one faces their final days or hours, they'll be more prepared than I was. Lisa Kanarek is a freelance writer with work published in The New York Times, The Washington Post, HuffPost, Wired and Newsweek. She is working on a memoir. Do you have a compelling personal story you'd like to see published on HuffPost? Find out what we're looking for here and send us a pitch at pitch@ I'm Ending My Life Today. Here's What I Want You To Know Before I Go. My Patient Invited Me To Her Home To Watch Her Die. What I Saw When I Arrived Gave Me Goosebumps. When My Husband Died, I Did Something That May Shock And Disturb You. I Hope This Explains Why.

Prescription confusion may have contributed to woman's death
Prescription confusion may have contributed to woman's death

RNZ News

time02-07-2025

  • Health
  • RNZ News

Prescription confusion may have contributed to woman's death

Close-up of MORPHINE SULFATE 1 MG/ML VIAL Photo: David GABIS / 123RF A coroner says Health New Zealand should centralise medicine dispensing records after he found a mistake with a morphine prescription may have contributed to a Levin woman's death. Coroner Mark Wilton found 71-year-old Norma Collins' death, at her home in May 2022, was associated with chronic obstructive pulmonary disease (COPD), with a background of excessive morphine administration. He could not determine the exact cause of Collins' death because she was cremated before it was reported to the coroner, and no post-mortem or toxicological analysis was done. But he found a GP at Ōtaki Medical Centre inadvertently prescribed a higher strength and dosage for Collins, which the pharmacist did not know about - and could not alert crucial people to. Collins suffered from end stage COPD with type 2 respiratory failure, pulmonary hypertension and anxiety. In the lead-up to her death she was prescribed morphine at 1mg strength at a dose of 2.5 to 5ml every three hours as needed by doctors at the Arohanui Hospice. Her daughter, who was Collins' carer, administered the morphine. She was advised to contact Ōtaki Medical Centre for repeat prescriptions. She did this in late May, concerned the liquid morphine was running out. A GP at the practice - who was not Collins' usual doctor, nor the lead practitioner at the centre - prescribed a higher dosage of 50ml of liquid morphine, at a higher strength of 10mg, administered at 1mg amounts. The GP told the Health and Disability Commissioner he checked prescribing records and the Ministry of Health database for Collins' medication history, but could find no previous prescription for liquid morphine, only one for a slow-release 10mg morphine tablet. He said he had not had specific palliative care training. "He said that he was unaware that Collins had previously been prescribed liquid morphine of a different dose and concentration by a doctor at Arohanui Hospice," Wiltobn said. The prescription was sent to Berrys Tararua Pharmacy, which had not dispensed the first prescription for Collins. It did not have access to her dispensing records so did not advise her daughter of any change. Wilton's report found Collins' daughter administered the drug as she had been doing - noticing her mother was drowsy and sleeping for hours at a time. "Collins' daughter did not think this was unusual as her mother had slept for long periods of time previously." She was found dead in her bed the morning of 31 May. Wilton said Health NZ should centralise dispensing records and share dispensing information through the New Zealand Electronic Prescription Service, following a previous finding by Coroner Alexandra Cunninghame. The service allows communication between prescribers and pharmacists, including emailing prescriptions and notifications for medications that have not been dispensed. He said if Berrys Tararua Pharmacy had access to dispensing records, the pharmacist could have checked out the different prescription. "This would have allowed the pharmacist at [Berrys Tararua Pharmacy] the opportunity to alert Collins' daughter to the difference in strength and dosage, or to question the GP at [Ōtaki Medical Centre] about the difference." Health NZ told Wilton it was making progress towards centralising dispensing records, but ultimately depended on funding allocation. Wilton said the Health and Disability Commissioner made recommendations to both the Ōtaki Medical Centre and Berrys Tarurua Pharmacy for future changes, and that the commissioner was satisfied this had been met. Sign up for Ngā Pitopito Kōrero, a daily newsletter curated by our editors and delivered straight to your inbox every weekday.

Anne Merriman, ‘Mother of Palliative Care' in Uganda, Dies at 90
Anne Merriman, ‘Mother of Palliative Care' in Uganda, Dies at 90

New York Times

time01-07-2025

  • Health
  • New York Times

Anne Merriman, ‘Mother of Palliative Care' in Uganda, Dies at 90

Working as a doctor in Singapore in the 1980s, Anne Merriman saw firsthand the agony that poor, terminally ill patients suffered after being released from the hospital. Treatment for pain, she discovered, was a matter of economic privilege, much like access to health care. The cost of intravenous morphine was prohibitive for many of her patients. So she came up with an alterative: powdered morphine. At her behest, a pharmacist at the National University of Singapore, where Dr. Merriman taught, developed a formula with just three ingredients: morphine powder, water and a preservative. The cost was a fraction of that of intravenous morphine. And the simplicity of the formula meant that, unlike medical cocktails containing sedatives and alcohol, it could be quickly adjusted and mixed for each patient to take home. For Dr. Merriman, a former nun who would go on to expand palliative care in the developing world — introducing a replicable, culturally flexible model of hospice to Africa, treating nearly 40,000 patients and training some 10,000 medical professionals across 37 countries on the continent — that small innovation was, she later wrote, 'a game changer.' Dr. Merriman died on May 18 at her home in Kampala, Uganda. She was 90. The cause was respiratory failure, her cousin Chris Merriman said. Want all of The Times? Subscribe.

11-year-old in remission from leukemia went to the hospital in pain. The prescribed morphine then killed her
11-year-old in remission from leukemia went to the hospital in pain. The prescribed morphine then killed her

The Independent

time17-06-2025

  • Health
  • The Independent

11-year-old in remission from leukemia went to the hospital in pain. The prescribed morphine then killed her

The family of an 11-year-old girl who died after surviving cancer was awarded $20.5 million after a jury determined prescribed morphine ultimately killed her. Ava Wilson's family filed a lawsuit against Advocate Health and Hospitals Corporation following her death in 2020. On October 31 of that year, Ava died in her sleep 'due to acute combined drug toxicity of morphine, hydroxyzine and gabapentin, the family's attorneys at Salvi, Schostok and Pritchard P.C. said this week. The lawsuit claimed she had lethal levels of morphine in her system. Ava had been discharged from a clinic in Illinois 36 hours before her death. While there, the child was 'crying in pain' and 'had difficulty walking and foot drop,' attorneys said. Medical staff ran tests that later showed Ava had low platelet counts, low blood cell counts, high liver enzymes and low blood pressure, the release stated. Her attorneys claimed her blood pressure had not been rechecked before she was discharged. 'Instead of admitting Ava to the hospital to get her blood pressure, heart rate and pain levels within acceptable and normal limits, Advocate employees sent Ava home with excessive pain medications,' Matthew L Williams, the lead trial attorney, said in a release. 'Ava's body was yelling out to these clinicians, 'help me!', and they just ignored it.' A nurse practitioner at the clinic prescribed Ava 100 mg of gabapentin to be taken three times a day and 15 mg of morphine to be taken every four hours as needed, according to the civil complaint obtained by The News & Observer. The child's oncologist did not examine her but endorsed the nurse practitioner's recommendation. 'Prior to this appointment, all of Ava's prior morphine prescriptions to be taken at home were for just 5 mg. (The nurse practitioner) also increased Ava's gabapentin prescription and sent her home. When taken together, the medications can make each other stronger,' according to a news release from the law firm. In a written statement, Advocate Health And Hospitals Corporation told the newspaper, 'Our hearts go out to this family. We are committed to providing appropriate care to every patient. Due to patient privacy, we are unable to comment further.' Ava had been in remission from B-lymphoblastic leukemia. A news release from the attorneys said her 'outlook was positive' and 'she had no detectable leukemia in her blood.'

Dr Anne Merriman obituary: doctor known as ‘mother of palliative care in Africa'
Dr Anne Merriman obituary: doctor known as ‘mother of palliative care in Africa'

Times

time17-06-2025

  • Health
  • Times

Dr Anne Merriman obituary: doctor known as ‘mother of palliative care in Africa'

Dr Anne Merriman revolutionised palliative and end-of-life care in Africa after developing a cheap form of oral morphine with a Singapore hospital pharmacist. Originally mixed in a kitchen sink, it included a pound of morphine, a preservative and colouring: lighter doses were green; stronger ones, pink and blue. A bottle cost about $2, a fraction of the cost of western formulations. Universally known as 'Dr Anne', she said: 'It's easier than baking a cake.' She developed the pain-controlling recipe after seeing terminally ill patients discharged from hospital because 'nothing more could be done for them'. Many died at home in severe and prolonged pain. 'A wild, undisciplined schoolgirl' who became a nun and a doctor, Merriman founded the pioneering Hospice Africa Uganda (HAU) in 1993 at the age of 57. Palliative care was largely unknown in Africa when she started her work in Uganda. HAU has treated more than 35,000 patients and trained more than 10,000 healthcare professionals from 37 African countries in the so-called Merriman model. Tough, stubborn and charismatic, she conceded that her 'brash and insensitive ways' had offended people, adding: 'I find it amazing that God has used this blemish as one of my greatest strengths.' It enabled her, she said, to be 'a forceful and obsessive' advocate for hospice care and to stand up to older male doctors who claimed that morphine prescribing would promote drug abuse. In her book Audacity to Love, published in 2010, she wrote: 'In Africa, in particular, some men are more dominant than in the rest of the world and don't take well to a female doctor bringing in a new speciality. 'Even today in Uganda, considered to have the best palliative care in Africa, there are consultants who refuse to allow patients' pain to be treated with oral morphine, even though sometimes these patients are their own colleagues.' Calling herself a 'true Scouser', she was born in Liverpool in 1935, the third of four children of Thomas ('Toddy'), a primary school headmaster, and Josephine Merriman (née Dunne). A bright, questioning child, she wanted to become a Catholic priest like her older brother Joseph and later wrote: 'I could not understand such discrimination and I still feel the same way.' The catalyst for her passion for palliative care emerged in childhood when her 11-year-old brother Bernard died from a brain tumour. She later spoke passionately about the absence of palliative care for him. There were other signposts signalling a spectacular future in caring. At the age of four, after seeing pictures of sick African children in a magazine, she declared: 'I'm going to Africa to look after the poorly children.' Nine years later she saw a film showing the Irish head of the Medical Missionaries of Mary (MMM) riding around the Nigerian village of Anua on a bicycle. She told her mother and a nun at school that she wanted to join the order and did so at the age of 18 after leaving Broughton Hall Catholic High School in West Derby, Liverpool. Recognising a rich potential in the wayward, recalcitrant novice with disappointing exam results, MMM enrolled her in a three-year internship at the International Missionary Training Hospital in Drogheda, Ireland. She spent a further year in a medical laboratory before going to medical school at University College Dublin. As a young doctor Merriman worked in MMM hospitals in Nigeria and in Drogheda, Edinburgh and Dublin. After 20 years as a religious sister and missionary, she returned to secular life in Liverpool to look after her sick mother and to specialise for eight years in geriatric medicine. Increasingly concerned by patients dying 'without pain and symptom control', she followed the teaching of Dame Cicely Saunders (obituary, July 15, 2005), the founder of the modern hospice movement. Saunders created a new kind of hospice, St Christopher's in Sydenham, southeast London, combining compassionate care with medical care. But Merriman's vision of a hospice was not restricted to a physical building. Hospice care, she said, could be given in the most appropriate place, including the patient's home. It included emotional, social and spiritual support as well as pain control. This made pragmatic sense in Uganda where 90 per cent of the population are reported to live in rural areas where doctors are scarce. Uganda became the first African country to permit nurses and trained clinical officers (physician assistants) to prescribe morphine; and the first African country to make palliative care part of its health service. After her mother's death in 1981, Merriman worked in Calcutta with Mother Teresa whose order included a hospice; in Penang in Malaysia as an associate professor; and in Singapore as a senior teaching fellow. In 1990 she accepted an invitation to become the first medical director of the Nairobi Hospice, only to leave quickly because of 'bureaucratic interference'. A case history she published in Contact, a World Council of Churches journal, secured her future in Africa. Describing a terminally ill patient who had a pain-free, peaceful death, it attracted invitations from several African countries who wanted to develop palliative care services. She chose Uganda as it was emerging from 25 years of war and reeling under the HIV crisis. Archbishop Emeritus Desmond Tutu (obituary, December 27, 2021) said in 2018: 'Anne has created a uniquely African template of love, dignity, care and compassion for people.' Nominated for the Nobel peace prize in 2014 and appointed MBE, Merriman protested that 'caring for the dying is the lowest priority in healthcare because doctors are trying to cure, not to care'. She lived in a large house overlooking Lake Victoria with her 'family', including three housekeepers and 15 dogs, once led by Adam and Eve. When Eve died she declared that Adam was grieving and found him a new partner. A warm, welcoming hostess, she was renowned locally for her Tuesday night dinners where 12 or more guests would include local dignitaries, visiting specialists and overnighting donors and volunteers. But she could also, as she put it, create a frosty atmosphere in a tropical climate. In one notable case, she highlighted the tragedy of Robert, a terminally ill 12-year-old boy with a huge cancer, a Burkitt's lymphoma, on his face. Robert slept under a counter in his aunt's shop and Merriman regularly took him to the hospice for a change of scene. He grimaced in pain as they drove across the many potholes along the way. Merriman said: 'After his [Robert's] death, the President of the USA, Bill Clinton, visited Uganda … They levelled the road so he wouldn't get a bump on the bum. The Roberts of this world do not count. But Presidents do. How sick is that?' Anne Merriman, doctor, was born on May 13, 1935. She died from respiratory failure on May 18, 2025, aged 90

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