Tag: End of Life Care

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As doctors, we are failing to put patients’ needs first, causing harm at the end of life

— Doctors including Zachary Tait and Rupal Shah, and recently bereaved readers Jo Fisher and Rebecca Howling, respond to Adrian Chiles’s column on how his father spent two of the last days of his life alone and distressed in A&E, for no good reason

‘As a junior doctor working in A&E, I loathed watching frail, mostly older people languish on trolleys in corridors.’

My condolences to Adrian Chiles on the death of his father. His column describing the futility of his father’s last “precautionary” trip to A&E (3 April) highlights a rising challenge of the ageing population. As health and social care services collapse, the harms and indignities of hospital admission increase, especially for those least able to advocate for themselves. As a junior doctor working in A&E, I loathed watching frail, mostly older people languish on trolleys in corridors, receiving substandard treatment that they didn’t want and were unlikely to benefit from. This is now the norm in every hospital I’ve been to.

A 2014 study showed that more than a quarter of hospital inpatients die within a year. The risk, perhaps unsurprisingly, increases with age. It is our responsibility as clinicians to have difficult and frank conversations with patients ahead of time; to be pragmatic, realistic and kind in our decision-making. Unfortunately, lots of this comes under “planning for the future”, which tends to slip down the to-do list during a crisis. It is the single most rewarding part of my work to have the time and opportunity to make care plans with patients, to know what matters most to them, and to stop the “shrugs” that Chiles faced at every turn. But medicine-by-protocol is quicker and cheaper than thought and pragmatism, so as resources are stretched ever further, it may continue to flourish. I am so sad for Peter Chiles’s distress, and so grateful that his son uses his voice to call attention to it.
Zachary Tait
Manchester

I have been a GP partner in Battersea, London, for 20 years. Unfortunately, Adrian Chiles’s opinion piece absolutely resonates. As clinicians, we are now taught to prioritise “safety” over all other considerations – despite the dangers inherent in doing so. Really, we are often protecting ourselves more than we are protecting our patients – an inadvertent side-effect of our unforgiving regulatory system.

We doctors are behaving as “artificial persons” who represent the healthcare system, and not as moral agents who have a duty to create meaning with our patients. We urgently need to move into a moral era of medicine – one that rejects both the protectionism of the past and the reductionism of the current context, which so often results in the cruelties and inefficiencies that Chiles describes.
Rupal Shah
Co-author, Fighting for the Soul of General Practice – The Algorithm Will See You Now

Adrian Chiles’s article stirred my thinking, as I have been on a similar journey. My husband died two weeks ago, having been advised that he had three months to live. This proved to be the case. With the Hospice at Home service, the NHS was truly wonderful. He died, however, with morphine slowly killing him. This could have been prevented if an assisted dying law was in place. One of the nurses said that what we were doing was cruel.

We were able to resist a possible hospital admission for chest pains by having what is called a ReSPECT document signed by our GP for “do not resuscitate”, and because we had an advance directive, dated 2022, that had been placed with the GP and was on his medical records. This made the whole process so much easier for us, but also for the various wonderful medics. Parliament needs to update our laws to align with so many in this country who wish for greater clarity and support Dignity in Dying.
Jo Fisher
Brampton, Cambridgeshire

In response to Adrian Chiles’s article, and having recently lost my own father, the best advice I can offer anyone is to make sure you have power of attorney in place for your parents. That is the way you can ensure that you have the power to override the decisions of medical staff who, while acting with the best intentions, will not know your parents as well as you do and may not make the decision that is best for them, or what they would have wanted. Having a power of attorney in place is more important than a will, in my view, because it enables you to help your living parent and ensure that their wishes are complied with. In my father’s final days, I was asked numerous times: “Do you have power of attorney?” I was very relieved to be able to answer: “Yes.”
Rebecca Howling
Toft, Cambridgeshire

As the daughter of an elderly parent, I very much understand the need for A&E avoidance, to cause least distress. No doubt waiting haplessly alone for many hours hastens demise. However, as a GP, I know that the huge increase in litigation over the last 20 years is a very real threat to doctors’ livelihoods. Even a simple complaint from a patient or their family can cause weeks, months, sometimes years, of stress to a health professional. Ruminating over every decision, every action or inaction, every justification, is enough to give us a heart attack – or worse, to make us follow in the footsteps of Paul Sinha and Adam Kay and quit the profession for a more peaceful existence.
Name and address supplied

Dear Adrian, I am so sorry that this happened to your dad. Sadly, it is a story repeated again and again. I am what is termed a “late career” doctor (over 55), and I recently transitioned from working as an emergency consultant to become a GP working in aged care. Over my 30-year career, mainly in emergency and other hospital specialities, although including a significant period in palliative care, I slowly came to appreciate that the way we have set up our emergency system doesn’t serve older people at all, and the frailest elderly are generally so poorly served that transferring them almost inevitably makes things worse.

My residents (200 across five aged care facilities) all have discussion and documentation of whether they should go to hospital and under what circumstances. The staff know to call me if there is any uncertainty, day or night. I do lots of family meetings so relatives can feel confident that the right decisions will be made. I love looking after old people and ensuring they get the best care that is right for their individual circumstances.

I firmly believe that aged care in particular is a GP subspecialty of its own. Too often care is fitted into lunch breaks and “on the way home” visits, and devolved to phone services out of hours. This is no way to treat our oldest and frailest, who deserve so much better. Again, I am so sorry.
Fiona Wallace
Sheffield, Tasmania, Australia

I read Adrian Chiles’s article about his father’s experience with empathy. My own father led a district health authority, with many hospitals under his care. He was intensely proud of the NHS, but in his 90s he was very clear that he didn’t wish to die in hospital or even to be admitted again unless absolutely essential. If he had an infection, he would be treated at home. Should it worsen and Dad die, it would be in his own bed. As a family, we listened. I was caring for him and know it took a huge weight off Dad’s mind to know that he need not dread the ambulance or the bewilderment of a strange place. Too many elderly people die in the back of ambulances and in A&E. Let those who are able to do so make informed choices about their end of life. It is a great comfort to them.
Dr Jane Lovell
Ashford, Kent

Adrian Chiles is correct that decisions about sending frail and elderly patients to hospital can be due to doctors being risk-averse. Doctors face a double jeopardy from the General Medical Council, who can take their livelihood, and the legal system if things go wrong.

Not all families can accept when beloved elderly relatives have reached the end of their life. Some people have unrealistic expectations about what healthcare can achieve in frail patients, and push for investigations and treatments even when it seems unlikely to affect the final outcome. If these are not performed, doctors can be accused of negligence or ageism. Most doctors would like less invasive healthcare at the end of life for themselves and their own families than they routinely offer to patients.

I would encourage everyone to write an advance directive or “living will” outlining how they would like to be treated in the event of their health deteriorating. I would also suggest giving a trusted person power of attorney for healthcare. These can be very helpful in reducing incidents like the one described in the article.
Dr Stephen Docherty
Consultant radiologist, Dundee

I would like to express my condolences to Adrian Chiles on the death of his father. I can empathise with him on many levels. I too lost my father recently in not dissimilar circumstances. I am a practising GP, a former medical director of an out-of-hours GP service, and now spend most of time as a management consultant trying to influence change in the NHS to stop incidents like this happening.

When I talk to clinicians and managers, I am always humbled by their devotion despite the pressures they work under. In my current assignment, over 32% of clinicians feel they are burnt out, and many more express intense frustration with the low-value clinical work they undertake. There is a limit to how much the system and the individuals who prop it up can give. The demand for care is rising every year.

I suspect that the GP who decided to send Adrian’s father to A&E without seeing him was under pressure to make a number of decisions that night. Given more choice, I’m sure they would have prioritised cases such as Adrian’s father over lower-priority, often unnecessary cases. What we do not discuss as a society with as much fervour as the system and those who provide care is how we consume care, so we can create time and space to support those who really need necessary attention.
Dr Riaz Jetha
London

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We’re all going to die someday.

— Toronto ‘death cafés’ offers a new way to get comfortable with that fact

Death-care practices vary according to culture and religion and many death doulas argue that in western cultures there’s still a lingering taboo around frank talk about death, something that makes it harder for many to deal with death, dying and grieving.

“We’ve heard the saying that it takes a village to raise a child. That village is equally important at the end of our life as it is in the beginning.”

BY Christine Sismondo

After more than a decade living side by side on a quiet street in Toronto’s east end, Fiona* and her partner Lorraine* had become close friends with their neighbour Tony.

“Lorraine and Tony talked all the time,” said Fiona. “When he started getting older and lived on his own, she helped him with errands and grocery runs. I mowed his lawn.”

When Tony was diagnosed with inoperable cancer in 2018, Fiona started cooking for him and filling in when support workers and nurses weren’t on duty.

When it came to preparing to die, though, the couple decided Tony needed more help than they could offer.

They enlisted the help of a death doula: someone who is trained to help with emotional and physical support as well as education about the end-of-life process.

In the last couple of days of Tony’s life, Fiona slept on the couch next to his bed. The doula and Lorraine sat with him until he died.

What struck Fiona as most remarkable, she said, was the “ceremony of it all.” Lorraine and the doula washed Tony’s body and sat with him for hours after he passed.

“I think, in a lot of western cultures, people don’t want to hang out with a person’s body after they’ve gone,” she said. “This felt like helping him to move on and there was a level of comfort in it that helped all of us.”

Death-care practices vary according to culture and religion, and many doulas argue that in western cultures there’s a lingering taboo around frank talk about death, something that makes it harder for many to deal with death, dying and grieving.

That started to change 20 years ago with the first “death café,” an initiative launched by a recently widowed Swiss sociologist named Bernard Crettaz. The concept — usually a scheduled group discussion about death among people from all walks of life (not to be mistaken for grief counselling) — has since spread and evolved.

“Now there are ‘death salons,’ ‘death dialogues’ and ‘death book clubs,’” said Kayla Moryoussef, who works with Toronto’s Home Hospice Association and has her own practice, the Good Death Doula. “There’s even a ‘death over drafts’ thing where people meet in bars to drink and talk about dying and death.”

Probably the biggest change to the death café model in Toronto has been that, pre-pandemic, the Home Hospice Association’s death cafés were held in bricks and mortar spaces. When the pandemic forced the cafés online and they no longer had to worry about venues and attendance, it allowed the association to offer more niche programming, such as cafés for parents, pet lovers caregivers and “spoonies” (people experiencing chronic pain).

“I came up with the idea for a spoonies death café because, as a person with chronic illness and disability, I know my relationship with dying and death is fundamentally different than my peers, — especially peers my age,” said Moryoussef, who is now in her late 30s.

The mission at the Home Hospice Association is to offer distinct programming for different communities in the name of accessibility and equitability.

“The reason we even got into this death doula training, development and mobilization was because we could see that our health-care system was not going to be able to keep up,” said Tracey Robertson, a doula and co-founder of Toronto’s Home Hospice Association.

Even if our health-care system could bounce back from its current state, most medical training is about finding cures, and many doctors receive little or no training when it comes to talking about death.

“We’ve all heard the saying that it takes a village to raise a child — we always say that village is equally important at the end of our life as it is in the beginning — some may even say more important,” said Robertson.

Death cafés are part of the foundation for that vision, she explained, because you can only build that village after death is normalized and communities are more comfortable talking about it.

“All it requires is for all of us to just get a little bit more comfortable with the fact that we all are going to be there one day,” said Robertson. “How can we help our neighbour who is faced with the reality of sitting in a doctor’s office and hearing words none of us ever want to hear?”

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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I understand why people are wary about assisted dying

— But it gave my mother a dignified end

Protesters gather in London to call for a change in the law to support assisted dying.

The Dutch legalisation spared her further misery. We don’t take euthanasia lightly; we’re just grateful to have the option

By

My mother, Jannèt, was 90 years old when she ended her life by means of euthanasia. For years she had been suffering from numerous serious and painful conditions that made her life miserable. She always worried about her health and was terrified of what the future undeniably held in store for her: more pain, more dependence on others, more suffering, more desperation.

On 20 June 2022 at 2pm she was visited by a doctor and a nurse. They had a last conversation with her, during which the doctor asked her if euthanasia was still what she wanted. My mother said yes. She had already decided that she would take the drink herself instead of being injected. She didn’t want to mentally burden the doctor more than necessary.

I was impressed by my mother’s courage in the face of death. She was completely calm, almost cheerful. Before the procedure started, she spoke briefly to us, her three daughters. She told us how it was important to take care of the Earth wisely, to recycle as much as possible and to look after one another. She then drank the small cup in one gulp. She fell asleep very quickly and 15 minutes later the doctor told us her heart had stopped beating. A long and tormented life had come to an end.

The country in which I live, the Netherlands, was the first in the world to legalise euthanasia in specific cases. That was in 2001. Assisted dying has become generally accepted in our country. We talk about it openly and we consider the possibility when situations call for it. We are grateful that this option exists, because it prevents so much pointless suffering. But we never talk about it lightly. Assisted dying has always remained something huge, something you don’t resort to lightheartedly.

Renate van der Zee’s mother Jannèt
‘I was impressed by my mother’s courage in the face of death.’ Renate van der Zee’s mother Jannèt

As a matter of fact, you can’t. In the Netherlands it will always remain a criminal offence to end a life. Exceptions are made only when a whole range of requirements are met. First of all, the patient must ask for it themselves and must therefore be mentally capable of asking for it. In addition, there are all kinds of due care requirements. For example, the doctor must be convinced that the request for assisted dying is voluntary and that the patient has carefully thought it through. The doctor must also be convinced that the patient’s suffering is hopeless and unbearable. That they can no longer heal, that it is not possible to alleviate their suffering and that there is no reasonable other solution. At least one other independent doctor must be consulted. That independent doctor will discuss the situation with the patient and form his or her own opinion about the situation.

Assisted dying is allowed only if a person is suffering owing to a medical cause, not if someone is simply tired of life or feels that their life is complete. My mother didn’t feel that her life was complete. There were still things that made her happy. She loved flowers and plants; she loved politics; she followed the news. But because of her deafness, incontinence and many other conditions she became socially isolated. Visits from friends became too much for her, and at a certain point even phone calls became impossible.

Walking became very difficult, and she grew afraid to go outside. She always loved to wander through a neighbourhood park, especially in springtime, when the bluebells and lilies of the valley bloomed abundantly. But she was no longer able to go there, not even in a wheelchair. She always enjoyed reading and watching nature programmes, but those things too became increasingly difficult. Her numerous ailments and her lack of mental resilience to deal with them made a normal daily existence impossible. And there was no prospect of improvement.

My mother’s euthanasia was a long process. Five years before her death, she told her GP that assisted dying was what she wanted if her life became unbearable. Over the years, my older sister discussed this wish with her during long conversations. She also took charge of all the conversations that were necessary before permission was finally given.

My mother wanted to celebrate her 90th birthday before she took leave of life. Her last birthday fell on Easter, which she regarded as meaningful. But what kind of birthday gift can you give to someone who will soon be gone? My older sister came up with the idea of making a book in which all her loved ones wrote down what she meant to them, or reminisced. She was very happy with that.

We sat close to her when she died. My younger sister took my mother’s hand and she held it tightly. The older sibling said in a soft voice, “You can close your eyes now, Mum.” That’s what my mother did. I sat there and tried not to cry. It’s not easy to witness your mother drinking a deadly potion and dying after 15 minutes.

The next day was the first day of summer. The sun was shining, the weather was beautiful. I woke up with the pain that my mother was gone. But also with a feeling of relief and deep gratitude that, after such an incredibly difficult life, she had been granted a painless and dignified death. I knew we had given her a great gift.

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↩!