Lessons from my dying therapist

— Care less, have fun – and accept the inevitable

‘For Sara, it’s the sea with its endless horizon that connects her to the infinite, the divine, the cosmos.’

In watching my beloved counsellor die, I finally learned how to live

By

My therapist told me she was dying the way someone else might admit to cancelling their gym membership. Oh no, she told me when I asked how her immunotherapy was going, she had stopped all that. She sounded regretful but not distressed. I was confused. I knew the tumours in her lungs were inoperable but I had understood the cancer was all but beaten. I’d asked how the treatment was going only to check she wasn’t suffering any nasty side-effects.

Actually, the chemotherapy hadn’t worked and the immunotherapy was somehow making things worse. She had been offered another treatment but that would mean losing her hair and she would rather not. So no, she had given everything up except the oxygen.

Porca,” Sara said, summarising the situation in a succinct Italian expletive, and I slowly understood that one of my favourite people on Earth was dying.

“I love life but if it’s destiny, I don’t mind to die. I think it’s an injustice but I say, Sara, care less for once!

“I believe in a miracle. I want another year, maybe they’ll give me another few months, it doesn’t really matter. I’m feeling quite well actually!”

In fact, we had two months. Rather than cut down on our sessions she upped them, refusing to accept any additional payment, and miraculously this was somehow enough time for her to teach me how to live without her and how to die excellently.

Dai, come on then, we’ve a lot to do. We need to close properly, and you need to have a baby before I die. Concentrate on making love!”

She was joking. Sort of.

“By the way, do you happen to know someone who can talk French with me? Someone nice and friendly. I need to practise my French for paradise.”

If the boundaries of a conventional client-therapist relationship sound as though they were blurred in her last weeks, they weren’t. At least, not unintentionally. Sara was unorthodox, certainly, but mostly she was cunning; she had a plan.


I found her in November 2018. I had been driving up a steep mountain road on a Greek island on holiday when I started to sweat profusely from my palms. I didn’t trust myself not to swerve over the edge. My whole body started to shake, then I couldn’t catch my breath, then I was going to black out, but there was nowhere to pull over. The roads were narrow and there was a precipitous drop inches from me, so I thought the safest solution was to drive at a crawl on the wrong side of the road, clinging to the mountainside. The trucks driving towards me in the same lane, horns blaring, swerving to avoid me, did not agree. When I finally reached flat land at the top, I stopped, got out and dropped to the ground, needing to press my belly to the earth like a snake. I abandoned the rental car and walked 35km to a port where I hitched a lift back to my Airbnb on a fishing boat. Then I Googled therapists.

One of the first results promising swift treatment for panic disorders was Sara Dryburgh, a clinical psychologist and psychotherapist with 30 years’ experience.

A few days after flying home, I am in the consultation room at her home in north London. A very tiny woman, maybe 50 or 60 years old, with a huge smile, red lips and excellent hair sits on the sofa opposite me, in a glamorous silk shirt, covered in blankets. I am also covered in blankets and wearing the fluffy slippers with dog faces she has offered me. The room is messy, littered with open books, mostly on myth and philosophy, mostly Italian; postcards; stuffed toys and trinkets. It’s totally mad.

Therapist Sara Dryburgh in Verona in the late 1980s
Sara Dryburgh in Verona in the late 1980s.

I tell her that my panic attacks had started when I was six and first understood that I was going to die. They have never really left, just shifted about. Since Greece, they have focused mostly on roads. Driving along any road with a drop, I can black out with terror.

“Yes, the panic is there to tell you something,” Sara says.

She doesn’t want to talk much more about why. She suggests instead that we try a guided meditation and uncomfortably, I agree. Surely reading a meditation from a book is something I can do without professional assistance. Still, I close my eyes and concentrate as she reads in her thick Italian accent. I miss every fifth word.

“You find yourself by a beautiful something. By the something you feel yourself very calm.”

I don’t know how, but it works. When we finish, I feel calmer than I can remember feeling. Or is it safer? In the course of the next three and a half years, I speak to her almost every week and my life changes completely for the calmer and the safer. I quit my job as an editor at the Guardian, move to Greece, and finally recover from a drawn-out, tumultuous breakup. We keep up our sessions by phone. Occasionally she speaks to me in Italian, refusing to accept that I can’t understand.

Dai! Come on, it’s so easy. You’d learn it in a few weeks if you tried, and then you could read my Morelli!”


In clinical terms, Sara is a Jungian existentialist. Up there with Carl Jung, Aristotle and Melanie Klein is her all-time favourite Italian psychiatrist Raffaele Morelli. I can’t find any of his work in English, but Sara doesn’t see language as a barrier to anything.

“You know Morelli – nothing is just one thing,” she says, as if I’d read every word.

She had started her career as a child psychologist in Verona but her first job in adult psychotherapy was at St Thomas’ hospital in London where she proved to be an extremely effective talking therapist, despite not speaking a word of English. By the time we meet, she has developed her own unique vocabulary.

“Don’t be a fascist! Always so extremist. You need to find a quotidianity,” she tells me.

Quotidianity is not a word, at least not an English one, but I understand immediately what she means. Equilibrium. Easiness. Normality.

“It’s sad, yes, but let’s find the good augit,” she suggests inevitably.

The good augit – also not a word – is the heart of Sara’s ideology. She created it, then embodied it. I had always heard it as some Italian variation of augur: that augurs well, there is an augit. It’s only when she’s dying that I finally ask her what she’s actually saying. Is it object?

“No! Not object. Augit. It means to be able to stay with the good bit of your life. To stay with the good augit is to find the good in an experience,” she says.

“If you don’t have this capacity to take the good augit, then you are trapped.”


Her dying is a crash test for the augit theory. I find myself walking through beautiful Athenian parks crying because I can’t focus on anything other than this feeling of crushing grief. There is an odd sensation of psychic bones being broken and reset. Sara understands this without me having to tell her.

“In this last period, I’ve never learned so much, it’s unbelievable. And you are doing the same. Maybe we are sharing because it’s like the both of us, in a different way of course, are being reborn,” she says.

“I will be reborn as an angel and you will be reborn as a different part of you.”

She has already given me several Lamy fountain pens, all with green ink, and packs of small black notebooks. Now she tells me she wants me to write about her. “Yes! I value myself. I think I did plenty, I deserve a good closure, or no? Write about Sara, ‘I never met somebody so mad, she is dying,’” she laughs. “I thought that, at my funeral – I will be dead – I want you to be there. It would be nice having you as a journalist.”

The absurdity of inviting someone to her own funeral makes her laugh so long and hard, it triggers a coughing fit, and she has to call me back. From this point on, I start to record all our sessions so that I can write about her more accurately, and Sara sets about heroically dying according to the good augit principle.

She has never learned so much, she says repeatedly and in awe. When I ask her what it is she has learned exactly, she always tells me a story about someone else.


In February, Sara is admitted to hospital with what I think is pneumonia. In fact, doctors have given her only a week or two to live. The room has a beautiful view over London, she tells me from her hospital bed, and all the nurses are kind and brilliant. One in particular fascinates her: she has three children but they live with her parents in Africa while she earns enough money to support them. Sara, a mother of three, sees this as superhuman.

“She is an excellent nurse, excellent. If I call her, she is able to forget everything and concentrate on the illness, yet at the same time, she is always thinking about these three children,” she wonders in amazement.

“I think there are periods in life when you can do things that are impossible. Morelli is right – in our mind there is not only negative, we have resources.”

The Italian physiotherapist who comes to treat her at home when she can no longer move easily is a genius. He knows instinctively that distracting her with stories from his childhood is the only way to help her through terrifying fits of breathlessness so he can work on her enough to get her diaphragm functioning again.

Then there is the reflexologist, she tells me, who comes to see her every morning and makes her laugh. She is so talented, also a language teacher and a makeup artist, and so strong.

“Oh my lord, how can they do it? It’s a distraction, but I’m genuinely interested,” she says when I ask her how she can be so totally absorbed in the lives, problems and abilities of everyone else when her own is ending.

“It doesn’t make sense to spend the last few months of your life in mourning.”

She can no longer do most of the things that had always brought her joy – cycle to London Bridge, go to Vivaldi concerts at St Martin-in-the-Fields, visit the National Gallery, walk on Hampstead Heath – but dying hasn’t robbed her of pleasure.

“I’m treated as a queen! I have a massage on the feet, I have physiotherapy. If I knew I would be spoiled like this, I would have got ill before,” she cackles down the phone in mid-July, breathing audibly through her oxygen mask.

She loves delicious food, her middle son is a brilliant chef, but her body now refuses to digest it and she’s losing a lot of weight. She has the bikini body she always wanted. “You know Italian women, they need to be perfect. I couldn’t care less. I always bought these very small bikinis with this big stomach.

“I told my friend in Italy I need to have a few bikinis. She says, ‘But Sara, you don’t come to the sea!’ I told her, who cares? I need a new one – I will wear it in bed. I want to have it before I die.”


When Sara was four, she had pneumonia. Then she contracted rheumatic fever. Her uncles would wake up at 4am and take her to the sea, believing the water would strengthen her. Her sister had died with pneumonia aged two, and Sara attributes her own survival to the sea. It feels as though it might deliver her the same miracle again, if only she could reach it.

“Mamma, I do miss the sea,” she admits later in July when it’s 40C in north London.

“I really believe in nature. We should treat nature well because we have more than one family; we are also all children of nature and the cosmos.”

Her beliefs are more ancient Greek than flower child, and they help me. Dying becomes less terrifying when it’s less a brutal cessation of being and more a return to some original state with your meta-family: Mother Gaia, Father Uranus and Grandma Chaos. I find the idea reassuring, particularly if Sara is floating about in there somewhere.

The last photograph taken of therapist Sara Dryburgh, five days before she died
The last photograph taken of Sara Dryburgh, five days before she died.

It’s about this time that I start hugging trees. I do it in the park near my house when I’m sure no other park walkers can see me. It’s a connectivity thing and it also helps. Maybe parts of Sara or me will be tree someday. I don’t tell anyone but her.

“You’re very clever to find parents in nature,” she congratulates me. “Your father is probably a tree, a birch or something similar.”

She bursts into song, offering in four perfect lines an animist’s answer to death anxiety: “Phoebe’s the sun / Phoebe’s the sea / Phoebe’s Phoebe / And is like a tree.”

For Sara, it’s the sea with its endless horizon that connects her to the infinite, the divine, the cosmos. It’s why her reliance on oxygen tanks is so difficult. She can no longer travel farther than an hour from home without panicking that her supply will run out. She will never see the sea again.


As the summer’s heatwave rolls on, she isn’t able to leave her third floor flat and breathing has become more difficult. One night, she almost dies. “At this moment, I really wanted from the heart the sea when it’s in a tempest, a rough sea. I have a friend who is teaching art and I just said to her, ‘Do you mind to send to me some rough sea?’ She sent me so many. Now I have the sea tempesta everywhere, it’s amazing!”

Somehow, for her, a symbol can fill any lack. She surrounds herself with paintings of the sea and fresh-cut roses. “I’m getting fixated on roses. I’m a rose fascist, I can’t have any other flower around me,” she tells me. “I only realised today it’s because the rose belongs to Italy. Also in England, there are roses everywhere, so in this moment when I can’t go to Italy, they are my roots.”


In early August, I fly back from Greece to see her. She looks thin but beautiful, full of energy, dragging her oxygen tank behind her like a bunch of balloons. I bring her pink roses and a wooden carving of a saint from Athens. The Greek Orthodox are very specific and the lady in the shop had recommended Savvas, a saint who specialises in miracles for people with lung cancer. Sara is delighted and we prop him up against the vase of roses, next to pictures of her sons, so she can see him from her chair.

She has a present for me, too: a pair of her silver starfish earrings.

“Just keep it. I want you to have something, for heredity,” she insists when I try to refuse. “Che bella, and they represent the sea.”

We talk a bit about her childhood and she tells me that, in the past few weeks, she’s been comforted by her sister.

“I contact her symbolically. She died but I have her inside myself,” she says with a shrug.

We finish the session by finding three good augits. Afterwards, she asks me to help her organise the presents she wants to send back to the little seaside town in Tuscany where she spent almost every summer. She won’t make it back again. A woman there had a miscarriage and local busybodies have been gossiping, saying it’s because she went out dancing that she lost the baby. Sara’s furious.

“What can I do? She doesn’t need a psychotherapist, so I got her all the girly bits. What does it take me? A few minutes, nothing.”

But she’s also bought presents for everyone in the town – books, toys, candles. I survey the haul, it looks like Santa’s sled, and tell her that she’s been very generous.

“Believe me if you’re generous it comes back,” she tells me. “Look at me! It comes back in so many things, unbelievable.”

I’ve been worrying for weeks about saying goodbye. What if it’s the last time I see her? It will be too painful. But when it comes to it, I feel warm and happy as I usually do after an hour in her company. I’m convinced she has longer than the doctors are allowing. They don’t know her. She has the sea, Saint Savvas, the cosmos. She’ll die when she’s ready.

“When do I see you next?” she asks as I head out the door, and I tell her I’ll be back in London in September.

“That’s nice,” she says. “I’m better. I think I will be alive. Go and enjoy, have a nice time. You can’t do things without risk!”


Over the next two weeks, our sessions are disrupted because I’m travelling, having a nice time. When we speak again, I’m back in Greece and Sara sounds frail. She doesn’t seem to be sleeping much any more but she’s been using the time alone at night to think and write. She studied philosophy before psychiatry and has composed poetry since she was a child. She has written her rules for a good life and asks if she can read them out to me. The effort is audible.

1 Balance: not putting all your effort into just one thing like professional success or accumulating wealth.
2 Honesty: being honest with yourself; not accepting comfortable lies.
3 Cherishing relationships with people who matter to you. Accepting that some people will never like you.
4 Developing your life to make best use of your own unique talents and attributes even when the result is not what society values the most.
5 Knowing when to give up on a lost cause. Accepting the inevitable with dignity.
6 Consider reading Marcus Aurelius’s Meditations and Edith Hall’s Aristotle’s Way.

I write them up, print them out and stick them on the wall next to my desk. I buy roses for my flat. I order a copy of Aristotle’s Way. When I next speak to Sara, it’s 16 August. She’s had a couple of difficult nights, she admits, but says she managed to get through them using mythology. “I’m incredible with myth, it’s Jung basically. I always go to Apollo. I decided to do a contract. I said, ‘Apollo, come on, give me a few months. I need to finish my clients properly.’ He hasn’t answered me yet what he wants back. What can I give back to Apollo? I need to think about it.”

I tell her I’m considering getting a tattoo of a rose because it reminds me of her, but she doesn’t like the idea at all. Why would I put myself through that sort of pain? I tell her that I love her.

“I think I represent a safe part and you have that inside you,” she tells me.

“I am ready for everything because I have an excellent life. I adore my clients. I did an excellent job. I really like my children and my husband. I couldn’t have more. Seriously! If I need to go, maybe it’s better that I’m the first because I have all this romantic theory to help me. I’m not worried about it at all, but I don’t want pain. This is it – I don’t want too much pain.”

She asks if we can speak for shorter periods but more often because talking for an hour is just too much. It’s Wednesday and we agree to talk again on Saturday. On Saturday morning, I receive a text from her number saying that she’s been taken ill. It doesn’t sound like her. It isn’t. Sara died on Friday morning.


Her memorial is held exactly one month after her death. It’s at the restaurant where her son is a chef. I wear the earrings she gave me, as I do when I want to feel close to her, and red lipstick because she would have liked it. Like almost everyone else, I’ve come with roses.

There is a board of pictures: Sara as a young girl looking adorably severe at her first communion; as a mother hugging her young sons; a toddler in the sea; a wife, her husband’s arm around her by a full rose bush. In front of the picture board is a spinning globe dotted with places she visited; her glasses; Savvas the Greek saint. I sit opposite the board next to an Italian woman. Like me, she is writing in a black notebook with a Lamy fountain pen with green ink. We notice and laugh.

Her husband and three sons speak. I wonder if they find it difficult facing a room of strangers in tears when they’re the ones who lost their wife and mother, but they are kind, curious and generous. They talk about Sara with a frank emotional intelligence that’s breathtaking. Her eldest son admits he had been having a hard time accepting that she was going to die. “I told Dad I was feeling very bad and he said, quite rightly, ‘You realise your mother has been sitting in a chair for two months doing nothing but scheming to make sure you’re going to be all right, so trust her.’ And I do. She was sneaky.”

Her middle son tells us they were all with her when she died.

“The nurse was administering the end-of-life care, all the drugs that meant Mum could have a peaceful end, comforting Mum, saying, ‘You’re doing really well, Sara, really well, that’s good, good, good.’ The last thing Mum did was to turn around and with great effort say, ‘I’m not doing good, I’m doing excellent.’

“That was her outlook. To look all the crappy stuff in the face and be like, nah, you’re all right. I see you’re there but I’m choosing to enjoy this more than I’m meant to. That ability to sing and dance no matter how shitty the situation and decide: no, I refuse to have a bad time here. I’m going to look at life and find it beautiful even if it sucks, and it really sucks at times. We should all remember that. We can all live excellently, not just fine.”

Her husband tells Sara’s clients that she has made arrangements for all of us who wanted to continue with another therapist, but repeats for us what he had told his son:

“If you feel lost, I would urge you to consider that she took great care in her last few months when she knew the end was near to prepare everyone, whether they were patients, friends, family. If you want her monument, look inside you.”

Back in Greece, I go to an island with some friends. I want very badly to be near the sea and Ikaria is one of the few Greek islands with proper waves. I want to learn to surf. It’s only on the drive from the ferry to the hotel that I realise the island is basically one huge mountain lined by terrifying cliffs. I consider getting straight back on the 12-hour ferry to Athens. I’ve never seen roads like them, not one bend without a dizzying drop to certain death. It’s fine, I tell myself, sweaty palmed. I’ll stick to surfing and hiking, writing and drinking.

On the second day, I sprain my ankle. If I want to do anything for the next week beyond sitting at the hotel bar, deathly cliff roads will be unavoidable. I’ve been listening to the recordings of my sessions with Sara. Her voice is clear in my head, or it’s my voice, I’m not sure.

Dai, come on,” it says. “Fuck it, care less for once. Have fun!”

The road leading to a secret beach we’ve been told about is a dirt track edged by a sheer rock face that plunges to the sea. My friend negotiates it carefully and I peer out of the passenger seat window over the edge. I’m ready for the cold sweat, the hyperventilation, the blackout. It doesn’t come. At the bottom, we find one of the most beautiful coves any of us have ever seen. I hobble towards the water, nothing but tree-lined cliffs and a deep blue horizon in front of me. The sea tempesta, I think. It is a very good augit.

Complete Article HERE!

What Is a DNR (Do Not Resuscitate) Order?

— Sometimes a “natural death” is the best option for everyone

by Angela Morrow, RN

A do-not-resuscitate order (DNR) is a legally binding order signed by a physician at a patient’s request. Its purpose is to let medical professionals know you do not want to be resuscitated if you suddenly go into cardiac arrest or stop breathing.

People who are chronically ill often regard a DNR as a graceful way to leave the world on their terms. The details of a DNR are usually discussed at the time of admission to a hospital, nursing facility, or hospice program.

This article explains what resuscitation means, its side effects, and its survival rates. It also describes the rules that often frame do not resuscitate orders, how to make a DNR order work for you, and some of the ethical issues worth considering.

What DNR Means

You may have seen TV shows set in hospitals in which a patient in cardiac arrest gets cardiopulmonary resuscitation (CPR), comes back to life, and is back to their old self in no time. In fact, being resuscitated is not so simple and can be dangerous in its own right.

Procedures used to resuscitate someone include:

  • Chest compressions: When a person’s heart stops beating, the heart cannot pump blood to the rest of the body, including the brain and lungs. Pushing down on the chest repeatedly can help keep blood flowing throughout the body until heart function is restored.
  • Intubation: When breathing becomes difficult or impossible due to an illness or injury, a patient may be intubated. This involves inserting an endotracheal tube through the mouth and into the airway. The tube is then connected to a ventilator, which pushes air into the lungs.
  • Cardioversion: Cardioversion is used to correct abnormal heart rhythms, including arrhythmias and atrial fibrillation (also known as AFib). This may be done using a set of paddles to deliver an electrical shock to the heart or via medication.
  • IV medications: Medications that are sometimes used in the case of cardiac arrest include epinephrine, amiodarone, vasopressin, and atropine sulfate. These are “crash cart medications,” so named because they can be found on the wheeled cart that medical professionals use during an emergency resuscitation.

For a patient in cardiac or respiratory arrest, a DNR states that none of these tactics will be used.1

Respiratory vs. Cardiac Arrest

The difference between respiratory and cardiac arrest is that respiratory arrest patients still have a beating heart that’s pushing blood around the body. Cardiac arrest patients do not. In both cases, though, a patient is unconscious and not breathing. Respiratory arrest will always lead to cardiac arrest if nothing is done to treat it.2

Resuscitation Side Effects

It’s important to realize that even if you are successfully resuscitated, you may end up with significant physical injuries as a result. For example, because the chest must be compressed hard and deep enough to pump the blood out of the heart, it can lead to broken ribs, punctured lungs, and possibly a damaged heart.3

Those who are resuscitated may also suffer brain damage. This can occur due to lack of blood flow to the brain followed by abnormal cell activity when blood flow to the brain is restored. Generally, the risk increases the longer the duration of CPR.4

Resuscitation Survival Rates

Survival statistics for resuscitation vary widely, partly due to the fact that there are many variables involved, including the age and health status of the patient and whether CPR was performed in a hospital, where emergency support is available.

A 2021 review looked at research published from 2008 onward that focused on the outcome of CPR in patients age 70 and older following in-hospital cardiac arrest (IHCA) and out-of-hospital cardiac arrest (OHCA). Survival rates were 28.5% and 11.1%, respectively.5

Meanwhile, a Danish study found that 30-day survival rates among nursing home residents who received CPR after OHCA was only 7.7%6

Fatal Outcomes

It’s a painful irony that most people who suffer cardiac arrest are not in a hospital, nursing facility, or hospice program. About 70% of them are at home, and the vast majority (about 90%) die. CPR can double or triple a person’s chance of survival.7

Types of Orders

A DNR order is sometimes referred to by other names, though the directive not to resuscitate someone is the same. Two other names for these orders are:

  • No code: In a hospital, an order to withhold resuscitation is sometimes called a “no code” to distinguish it from a “full code” or “code blue,” both of which mean every effort should be made to resuscitate a patient.
  • Allow natural death (AND) orders: While a DNR order simply states that no attempts should be made to restart breathing or restart the heart if it stops, an AND order ensures that only comfort measures are taken.8 This would include withholding or discontinuing resuscitation, artificial feedings, fluids, and other measures that would prolong a natural death. These orders are typically used in hospice settings or elsewhere for terminally ill patients.

Discussion Matters

A study on DNRs and ANDs finds “healthcare providers should address the concept of natural death, provide comprehensive information, and help patients and families to overcome the barriers.”8

DNR Order Rules

The application of DNR orders varies from state to state, especially regarding out-of-hospital (meaning ambulance) care. Some states have standardized forms for DNR orders; if the order is not written on that specific form, it cannot be honored. Other states are less regimented and honor any type of clear DNR order.

Many states allow emergency responders to follow DNR orders written to other care providers, even if they aren’t written on standardized forms. For instance, in New York State, paramedics and emergency medical technicians are usually allowed to follow DNR orders written for the staff of a nursing home.

They also may be able to honor orders written for patients getting nursing care at home if the home care nurse has a copy of the DNR order in hand.1 Each state is different, and municipalities may differ within each state.

Regardless of the format or the venue, DNR orders almost always follow some of the same general rules; they have to in order to be valid. DNR orders must:

  • Be written by a doctor rather than verbalized.9 There are exceptions to this rule, such as an emergency medical service physician ordering an ambulance crew to withhold resuscitation via the radio or a registered nurse taking an order from an admitting doctor over the phone.1 Generally, there are safeguards for these exceptions to make sure the order is validated later.
  • Be signed by a doctor. In those cases where orders were taken by a nurse over the phone, states usually set a deadline for the doctor to physically verify and sign the order.
  • Include the patient’s name as well as the date. Depending on the state, orders may expire after a certain amount of time or there may be a deadline for the physician to follow up. Even if a DNR order doesn’t expire, a particularly old order may prompt a caregiver to revisit the decision.
Diligence on DNR Orders

A doctor writes a DNR order only after conferring with the patient (if this is possible), the patient’s appointed representative, or members of the patient’s family.

Making a DNR Order Work for You

If you opt for a DNR order, here’s what you can do to ensure your wishes are respected:

  • Keep the physical order on hand and display it wherever paramedics might find you. Make a point to tell them about the order when they arrive. It’s a good idea to have more than one copy available and displayed, as well as a copy to bring with you to the hospital.
  • If you are traveling, ask your traveling partners to keep a copy of your DNR order on them at all times.
  • Consider wearing a piece of medical jewelry to alert others of your intentions. MedicAlert Foundation provides jewelry designed specifically for patients with DNR orders. The foundation keeps a copy of the order on file and can fax it to anywhere in the world.

DNR Expresses Limits

A DNR order addresses the issue of CPR, but it does not include instructions for other treatments, such as pain medication or nutrition.10

Ethical Complications of DNR Orders

The inconsistent application of DNR orders means some patients may get less than optimal care once providers are aware of the presence of a DNR order.11 It’s important to remember that a DNR order is not an order to withhold all treatment. It’s an order not to resuscitate.

Even the mere mention of “DNR” can spawn a wide range of reactions, many of them emotionally charged. Discuss the options with your doctor and your family when everyone is calm and rational—and hopefully sooner rather than later.

Why a Patient Would Choose to Have a DNR Order

People with a terminal disease, such as advanced cancer or dementia, may not want CPR. A poor prognosis lowers the likelihood of survival, with a higher risk of heart, lung, and brain damage if resuscitation is attempted. Views on CPR within the medical community are ever-evolving too, with some professionals revisiting guidelines on how and why resuscitation should be considered.12

Summary

A do-not-resuscitate order instructs healthcare providers to refrain from cardiopulmonary resuscitation (CPR) if a patient’s breathing stops or if the patient’s heart stops beating. It can also pose a dilemma, but one worth considering, especially in the context of your health (or the health of a loved one).

Here’s why: CPR requires the heart to be compressed hard and deep enough to pump the blood out of the heart. As such, it can lead to broken ribs, punctured lungs, and possibly a damaged heart. Those who are resuscitated may also suffer brain damage.

These actions may be too much for someone in frail health. If you wish to explore a DNR order, it’s important to know that the orders vary from state to state. Be sure to investigate the rules in your state before proceeding.

A Word From Verywell

Understandably, loved ones often have difficulty talking about a DNR order and may feel they are “giving up” on their loved one. You can take charge of your end-of-life plans while you’re still able to do so, and investigate the rules governing DNR orders in your state. Keep in mind that even if you get a DNR order, you have the right to change your mind, revoke the order, and request CPR.10

Frequently Asked Questions

  • How do you get a do-not-resuscitate order?

    You can get one from a hospital, nursing home, or hospice program. Most states have standard forms that you can download online.

  • Who can sign a do-not-resuscitate order?

    A doctor must sign a DNR order with the consent of the patient or the patient’s healthcare proxy or designated power of attorney.9

  • Can a DNR be ignored?

    The Patient Self Determination Act (PDSA) requires that the wishes of an individual and any existing advance directives be honored in the United States. However, providers do occasionally disregard a DNR due, for example, to lack of communication.13 It’s also possible that an existing DNR is honored but providers fail to confirm with a patient or their representative.14

  • Complete Article HERE!

A Son’s Decision to Help His Father Die

— Ben Griffith’s dad chose a method to end his life that was controversial — but protected by a Supreme Court ruling

John Griffith in 1989 cradling granddaughter Jordan.

By John Rosengren

1990: The right to refuse medical treatment

Ben Griffith rose before the sun the morning of March 18, 2022, packed his car and began the long drive from his house in Frankfort, Ky., to suburban Kansas City, Mo. The time had come to help his father die.

Months earlier, when John Griffith made clear to his three sons that he would end his life by denying himself food and drink rather than go into an assisted-living facility, his two older sons objected. Only Ben, the youngest at 67, agreed to keep vigil with his 99-year-old father. Now that John’s quality of life had deteriorated to the point where he would rather die than have his misery prolonged with unwanted treatment in assisted living, Ben was heading to his father’s house.

From their many conversations on the subject over the previous decade, Ben knew his father would have chosen the route of assisted suicide if it were legal in Missouri, as it is in 10 states and the District of Columbia. But it wasn’t. In September 2021, in a power-of-attorney directive, John had given his sons the authority, in the event that he was incapacitated, “to direct a health care provider to withhold or withdraw artificially supplied nutrition and hydration (including tube feeding of food and water).” Now, instead of assisted suicide, John had opted to voluntarily stop eating and drinking, a process known in right-to-die circles by the acronym VSED. The process generally takes between seven and 15 days. Because it can be painful, many who opt for it also seek palliative care through hospice services — which is what John Griffith did.

Seated at the kitchen table of his Frankfort home and surrounded by family photos, Ben recounts his father’s experience with life and death. (Ben participated fully in this article; his eldest brother, Tim, did not comment; his elder brother, Jon, offered this comment: “I just know that Ben did a great job representing the family and our experience of going through VSED with Dad. I don’t need to add anything more.”)

There’s a frost threatening that evening, so Ben and his wife, Patricia, have moved inside a dozen or so plants now safely perched along the kitchen counter. Ben, a piano tuner with short gray hair, is tall and lanky like his father, who was 6-foot-4. His words occasionally give way to emotion. His soft blue eyes, also like his father’s, are warm and kind.

John Griffith — born Dec. 12, 1922, in South Carolina, the son of a Methodist minister — was a man of such strong principles and resolve, he bordered on obstinate. Despite widespread public support for the United States’ involvement in World War II, Griffith at 19 opposed war “for any cause whatever” and refused to register for the draft, which he considered a “contradiction of Christian teachings, democratic liberty and individual freedom.” Instead, as he wrote in an essay for the book “A Few Small Candles: War Resisters of World War II Tell Their Stories,” he served 24 months in federal prison.

The influence of a Quaker attorney willing to defend him pro bono sparked John’s conversion to the Religious Society of Friends. After his release from prison, he attended William Penn College, a Quaker institution in Oskaloosa, Iowa, where he met and married Reva Standing. They raised four sons. Griffith spent his working career managing a farmers cooperative. When their oldest son, Chris, was murdered in 1986, Griffith stuck to his pacifist convictions and opposed the death penalty imposed on his son’s killer.

Reva suffered a stroke in 2003 and showed early signs of dementia in the hospital. Despite his belief that it was wrong to end another’s life in war or by capital punishment, John made the decision to honor her wishes and remove his wife of 56 years from life support in what he considered an act of compassion. “It was clear if she came home, there would be a loss of brain function,” Ben says. “He knew one of her biggest fears was living with dementia.”

Neither father nor son could bear watching a loved one suffer unnecessarily — a point driven home by the experience of Ben’s mother-in-law. In 2016, when Patricia’s 93-year-old mother began losing her sight, she moved into an assisted-living facility and eventually a nursing home after going completely blind. “She fell gradually into a shell,” Ben says. “Her existence was getting not very good.”

 

It was so painful for Ben to watch that he started searching online for ways he could end her life to put her out of her misery and not get arrested. But his father urged him not to do anything that would have negative consequences for his wife and their two adult children. Ben tears up at the telling. “I could have ended her life,” he says. “She suffered — but he said, ‘Don’t do it, Ben.’ ”

Her ordeal seemed to spark something in John. Already into his 90s by then, he began contemplating the end of his own life, which he discussed openly with his sons. Patricia’s mother’s situation “cemented the idea for him: If you go into assisted living, you lose a lot of choices,” Ben says. “If something happens, they call for help. You go to the hospital and they treat you. Same thing if you are in a nursing home. If you’re unresponsive, they are going to treat you.” John made it very clear that he did not want to go into assisted living or a nursing home.

A man as spiritual as he was stubborn, John had meditated daily for years, an hour or so at a time, an essential part of his religious faith and practice. He also swam a mile most every day at the local YMCA. At 90, he set eight state swimming records for nonagenarians on his daily swim, according to Ben. He had decided that once he could no longer swim, life would no longer be worth living and he would begin VSED. “He had identified the red line,” Ben says.

More from The Unwritten Rights Issue

John “had his last swim at 98,” Ben recalls. His “will to live” did continue, but he was losing physical strength. He was having trouble walking and would soon have to use a wheelchair. And he felt himself slipping cognitively. So that’s how he came to fill out his health-care directive in September 2021. With the help of Compassion & Choices, a nonprofit organization that advocates for access to aid in dying, he also filled out an advance directive addendum indicating his desire throughout various stages of dementia that others “keep me comfortable while stopping all treatments and withholding food and water so that I can die peacefully.”

That fall John discussed his VSED intentions with his primary care physician, who did not approve. The doctor tried to talk John out of the idea over the course of several visits. But John would not be dissuaded.

He informed his sons of his plans in a Zoom call. The two older sons protested. Tim, who had been his father’s primary caregiver, taking him to appointments and helping him at home, tried to persuade his father to move into assisted living instead, according to Ben. But their father refused. He would stay in the two-bedroom townhouse he and his wife had lived in for years and die by his own design. There was no talking him out of it. “If he was going to do something, he was going to do it,” Ben says.

From left: John Griffith celebrating his high school graduation in 1940; with wife Reva in a wedding photo from May 1947.

Though Tim and Jon would visit, they did not want to be accomplices to VSED; Ben alone agreed to be with their father continuously throughout the process. “I felt it was an act of love,” Ben says.

In January 2022, John developed a cough. The prescribed medication he took for it made him confused, even after he stopped taking it. He had trouble focusing during his meditation. He began to notice “a sharp decline, both in memory and in my ability to make decisions,” he wrote in a letter to family, friends, neighbors and his spiritual community. In February, he was diagnosed with dementia.

Physically, he was also failing fast. He could no longer stand on his own. He needed the help of home health-care attendants using a lift device to get from his bed to his wheelchair and back again. He was outfitted with a catheter. By late February, his quality of life had sunk to the point of no return. “It’s exhausting to get through every day,” he explained in his letter. “I’ve had a good life. I think the time for VSED is now.” In another Zoom call with his sons, he told them the same. He eventually set March 19 as the date to begin his life-ending fast.

Ben and his brothers hired a hospice service to provide palliative care. But the assigned chaplain, a Catholic priest, said he could not in good conscience minister to someone committed to dying by their own doing. Another chaplain, who was not Catholic, took his place.

“While I agree with the Court’s analysis today, and therefore join in its opinion, I would have preferred that we announce, clearly and promptly, that the federal courts have no business in this field. … This Court need not, and has no authority to, inject itself into every field of human activity where irrationality and oppression may theoretically occur, and if it tries to do so it will destroy itself.”— Justice Antonin Scalia, concurring, Cruzan v. Director, Missouri Department of Health

Others objected, too. Some covertly, some overtly. His next-door neighbor did not disagree with his decision explicitly, though she did come over to read the Bible with John. “She wanted to make sure he was right with Jesus,” Ben says. Once John began the VSED process, Ben says, she stopped visiting.

A key word in the 14th Amendment’s due process clause is “liberty,” a concept that runs deep in the American psyche. “We think of it in terms of: Each individual person controls their own body, especially if you’re an adult and competent,” explains Rob Gatter, a professor at Saint Louis University’s law school and director of its Center for Health Law Studies. “It’s the same reason motorcyclists get mad when states say you have to wear a helmet: … I’m a competent adult and I don’t need the state to be my parent. I make choices for myself understanding if I’m wrong I suffer the consequences. My body does not belong to the state. My body belongs to me.”

Ben arrived at his father’s townhouse in Gladstone, Mo., about 3 o’clock the afternoon of March 18, having driven the better part of 11 hours. He had braced himself for the ordeal, knowing it could become more difficult if his father wavered and requested food or water. Ben could not deny him that. “It’s voluntary,” Ben says. “If a person wants food or water, you give it to him. I had done my homework with Compassion & Choices and read their list of guidance. It says remind the person, ‘Dad, you know you’re doing VSED. If you take ice chips or water, it’s going to delay the process.’ I prepared before I left for that.”

Ben found his father in good spirits. “I am convinced that there is something more: that human consciousness is independent of the body and that the death of the body is not an ending of consciousness — it is rather a passing,” John had written a couple of weeks earlier. “Into what? I confess that I do not know, but I have a deep, abiding trust in the Divine Ground of all existence that the major world religions have variously called God, Mind, Allah, Tao, etc. My parting wish for my friends is that they nurture compassion and walk humbly in the presence of Unfathomable Mystery.”

In addition to the hospice staff coming and going and a home-health caretaker on duty 24/7 beginning March 19, there was a stream of visitors to John’s house the first several days. Neighbors, fellow Quakers and other friends stopped by to spend time with him. John made small jokes at times and laughed with them. Tim and his family also visited. Tuesday, March 22, John was happy to see his son Jon, who arrived from Vermont. He had energy to send some emails. He spent half an hour being interviewed over the phone by someone from Compassion & Choices, which tired him out. The hospice team gave him a bath. Several times a day, Ben gave him the medications prescribed by the hospice nurse — Haldol to ease anxiety and hydromorphone to soothe pain — by squirting them into his mouth with a syringe.

By Wednesday, the fifth day of his fast, John was weakening. It was more difficult for him to get in and out of his wheelchair, even with the power lift. The hospice nurse added lorazepam to John’s list of medications to help him relax. The next day, Thursday, he was talking less, and when he did speak, he didn’t make much sense. He insisted on getting out of bed at one point, then drove his wheelchair into the kitchen but did not seem to know what to do once he got there.

John Griffith on his 90th birthday in 2012, with sons, from left, Jon, Ben and Tim, holding Sammie the dog.

By Friday, March 25, John’s face had lost its color, and his eyes had dulled. One of the nurses tended to his feet and lower legs, which had swollen with fluid. Ben began to sense his father’s life would soon be over.

The process was difficult to watch. Some couldn’t. Matt, married to Tim’s daughter, found it too upsetting to interact with John when he visited. But Ben stayed the course. “I was trying to keep in the role of making sure it happened,” Ben says. “I was the protector of the process.”

At one point during the week, someone informed Ben that a caregiver was swabbing his father’s mouth with a sponge soaked in juice — despite being given clear instructions that they were not to give him any food or liquid. Ben had to go into his father’s bedroom and stop her. “It’s really hard for some people to hear that someone isn’t going to eat or drink anything until they die,” he says.

So hard that others want to intervene. But the law is clear. “A physician who treats a patient against their will — even to save their lives — would be guilty of battery,” Gatter says.

Ben worries the Supreme Court’s recent ruling overturning the right to abortion could cloud the right to refuse treatment. “How can you tell a person you cannot make your own decision?” he says. “It’s their legal right. Who’s going to take that away?”

By Saturday, March 26, eight days into his fast, it was clear John had neared the end. He lay on his side in the fetal position, clutching the rails of his hospital bed and moaning. Ben had been sleeping at his brother Tim’s house, a 15-minute drive away, but he decided to spend that night at his father’s townhouse.

A little after 1 a.m. on the 27th, the nighttime caregiver woke Ben and told him death was at hand. Ben found his father still in the fetal position, breathing very slowly. He laid his hand on his father’s shoulder and leaned over him so that his lips nearly brushed his father’s ear. “It’s okay,” he said. “Let your body go. We love you.” And within a few minutes, John Griffith was gone.

Complete Article HERE!

End of Life Care for People with Developmental Disabilities

Why talking about this taboo subject with your loved one early on is important

Charlotte Woodward and her mom, Darcy Woodward

By Beth Baker

Planning for our own death or that of a loved one is difficult. According to a survey by The Conversation Project, 92% of us think it’s important to discuss our end-of-life wishes.Yet only one-third of us do so. 

For those with intellectual and developmental disabilities (IDD), those conversations happen even less frequently.

“Death in general is still a taboo subject,” says Dr. Kyle Sue, at the University of Alberta, who treats people with developmental disabilities of all ages. “For people with a disability, health practitioners don’t know how to bring it up, or they don’t know how much the person will understand. There’s a level of discomfort in trying to include them.”

IDD includes conditions that appear before the age of 18 that affect physical development, learning, language or behavior. Some conditions begin in utero, such as Down syndrome which is caused by an extra chromosome. Others are from a birth injury, such as cerebral palsy. One common disability, Autism Spectrum Disorder (ASD), likely has multiple causes and may not appear until after age one.

“I’ve thought about the end of my life. I know for a fact that I won’t be in denial of it… I would flat out accept it. Maybe I’ll give my body to science.”

An estimated 1-3% of Americans have IDD conditions, according to Margaret Nygren, CEO of the American Association on Intellectual and Developmental Disabilities (AAIDD). Improvements in heart surgery and other advances have greatly extended the lives of many.

Most notably, the average life expectancy for people with Down syndrome is now 61, compared to just 25 years old in 1983. Children with cerebral palsy are also living longer. A study in BMC Neurology found that 80% of children with mild CP will live to be 58 or beyond. Although this is good news, it presents new challenges as individuals outlive their parents or other caregivers.

Diseases associated with aging, such as Alzheimer’s disease, are becoming more common, especially for those with Down syndrome. Some 30% of people with Down syndrome in their 50s have Alzheimer’s, and 50% of those in their 60s.

Having conversations about end-of-life wishes is important while the individual can communicate.

Nothing About Them Without Them

Charlotte Woodward defies stereotypes regarding people with Down syndrome and other disabilities. As is common in Down syndrome, she was born with a heart defect and has had four open-heart surgeries including a heart transplant — one of the few people with Down syndrome to receive an organ transplant.

Woodward studied sociology at George Mason University, concentrating on discrimination against people with disabilities in the medical system, and she is now only the third person with Down syndrome to be a registered lobbyist. She works to advance the Charlotte Woodward Organ Transplant Discrimination Prevention Act, introduced by Washington State Republican representative Jaime Herrera Beutler and California Democrat Katie Porter.

“Actually, the most respectful thing you can do is to give them the opportunity to express their wishes.”

“I’m still in my thirties. I want to live my life to the fullest,” says Woodward, who is Education Programs Associate with the National Down Syndrome Society. Still, “I’ve thought about the end of my life. I know for a fact that I won’t be in denial of it. I won’t be angry or bargain. I would flat out accept it. Maybe I’ll give my body to science. And I would like to get my last will and testament in place and advance medical directive as well.”

Her mother, Darcy Woodward, 58, finds such conversations difficult. “There’s definitely a concern about the future among parents of children with disabilities. We’re trying to make sure things are in place to protect our children who will hopefully have long healthy lives. I try not to think about it, but I know it’s important.”

In the past, someone like Charlotte would not have a seat at the table when it came to planning her health care. But in the 1980s that began to change, explains Leigh Ann Kingsbury, a North Carolina gerontologist who wrote one of the first guides on end-of-life planning for people with IDD.

People with disabilities who receive Medicaid-funded services must have an annual plan for their care. “Up until the ’80s these planning processes were really perfunctory — professionals getting together and saying ‘here is what we think is best for Susie Jo’ in a highly patronizing, not culturally relevant manner,” says Kingsbury.

That began to change when advocates demanded that their voices be included. In the 1990s, the slogan “nothing about us without us” became a rallying cry in the disability community.

Advanced Directives

“People with IDD can and do create advanced directives for their care,” says Nygren. “The thing that’s different is they need some help discussing and thinking through the options, the way people without IDD can do it independently.”

But many medical professionals and caregivers are reluctant to include people with IDD in decision making. “I never met a person with IDD who didn’t understand the cycle of life,” says Nygren. “People aren’t automatically comfortable about it, but there’s awareness. People want autonomy and control over decisions that affect them. Actually, the most respectful thing you can do is to give them the opportunity to express their wishes.”

A person smiling at home. Next Avenue, developmental disabilities, end of life care
Charlotte Woodward

According to Nygren, the number of those with extreme intellectual limitations who cannot understand or speak is small, compared to the overall population of people with IDD. Even then, people who know them well know their likes and dislikes that can help inform care.

Dr. Brian Chicoine has been medical director of the Adult Down Syndrome Center in Illinois since 1992. The center was the first clinic to serve adults with the disability. He cautions that there is nuance about how and when you talk about death. “Our patients are so concrete. They can become so focused on the fact that they’re dying, they have trouble living,” he explains.

Many have a different understanding of time, he adds. For example, the parents of a patient bought cemetery plots for themselves and their son. “This was a very bright guy, but for the next five years we dealt with his depression,” as the young man focused on his death which was far in the future. “So we have to be careful with these conversations,” says Chicoine.

Barriers in the Medical System

Whether or not you have disabilities, having a good relationship with your primary care physician is important for having your choices honored at the end of life. But finding a doctor can be tough for those with IDD. Physicians often do not want to treat people with disabilities. An article in the October 2022 issue of Health Affairs entitled, “I Am Not the Doctor For You” about three focus groups of physicians across disciplines and regions of the U.S. found considerable reluctance and outright prejudice towards people with disabilities.

“Some participants … revealed negative attitudes … and commonly used outdated or ableist language (for example, ‘mentally retarded’),” according to the study. Some admitted that they had turned away people with disabilities from their practice. One reason is time constraints. Explaining medical issues to someone with an intellectual disability takes more time, yet doctors are reimbursed for a 10-minute appointment even if it takes 30.

“Even a person who is very, very ill or who has a psychiatric illness or Down syndrome can say ‘Don’t do this to me.'”

Pervasive “ableism” is common including in the medical profession. Many providers assume that a person with IDD has a poor quality of life. Such assumptions can have serious consequences. An article in a recent Journal of the American Board of Family Medicine entitled, “Ableism at the Bedside,” found that people with IDD had a higher risk of mortality from COVID-19 compared to others with similar medical problems.

In one case, ICU physicians repeatedly pushed for a “do not resuscitate” order to be in place for a woman with Down syndrome. Her primary care doctor and family refused. The woman went on to a full recovery.

Medical schools and residency programs offer little training to help providers feel more comfortable treating this population.

Sue begins end-of-life conversations when a patient he’s followed for years develops more serious symptoms.

“When I bring it up, I’m not saying, ‘Okay let’s talk about dying.’ I begin by asking what are they seeing? How is your child compared to ten years ago? How are things at home? For everyone who has serious health conditions, we do need to talk about planning for the future. As conditions change, it’s best to be prepared well ahead of time, rather than making difficult decisions in a crisis. I’ve found that families are quite receptive,” Sue says.

Palliative Care

If a person ends up in the ICU, communication can be very challenging. Palliative care specialists must assess their level of pain, for example, if they cannot converse. Treatment choices can be hard to determine, especially if there is no guardian or caregiver who knows the patient well. Guardians are typically family members, even if they have not been living with the patient. The staff of group homes who may know the patient best are usually not included in hospital decisions.

“No matter who the patient is, we always want to get as much information from a person based on what they do and don’t want, what they do or don’t value,” says 2021 Next Avenue Influencer in Aging, Dr. Jessica Zitter, a specialist in both critical care and palliative medicine at a public hospital in Oakland, California, and author of “Extreme Measures — Finding a Better Path to the End of Life.”

“The first principle is to try to elicit from a person the things that are important to them. Bring that information into their health care plan and medical decisions. Even a person who is very, very ill or who has a psychiatric illness or Down syndrome can say ‘Don’t do this to me.'”

Ultimately with a life-threatening illness, no matter the patient’s disability, “What we really need to be saying is, we’re not going to abandon you. We want to do what you want until the last moment. We’ll hold your hand,” says Zitter.

Supported Decision Making

Supported decision making is a process that helps people with IDD make decisions about important life issues. A team of family members, friends, neighbors, professionals or volunteers manages discussions to help the individual decide things about jobs, marriage or housing.

The process can also be used for end-of-life planning.

Darcy Woodward is exploring how to disband her guardianship and transition to supported decision making. She recognizes that Charlotte can make her own decisions. “I wouldn’t want guardianship to transfer to a stranger who would disregard Charlotte,” she says.

For parents of adults with IDD, such planning is critical, which is why The National Down Syndrome Society plans to publish an end-of-life guide. “It’s really about proactively planning for end-of-life care,” says Rachel Grimm, manager of health programs, aging and caregiving for NDSS.

“We want readers to recognize that having a backup plan and planning for the future are so important for happiness and sustainability. We’re encouraging families to find a lawyer to walk them through,” Grimm says.

Complete Article HERE!

Exploring the ordinary and extraordinary in end-of-life care, death

Dr Samuel Labaron PhD, M.D. at Stanford Hospital and Clinics on Thursday, November 12, 2009.

by

Samuel LeBaron, MD, PhD, is a family medicine specialist and Stanford Medicine professor emeritus who now faces the situation he guided patients through during his career: navigating terminal lung cancer. In his memoir, Ordinary Deaths, published in July, LeBaron weaves personal stories with vignettes that illuminate the patients whose lives he’s witnessed.

Throughout his career as a family medicine doctor, hospice care provider and technician in a medical examiner’s office, LeBaron jotted down stories of his patients, intent to one day share them with his inquisitive children who asked what he did every day. He chose his words carefully, creating a repository of clinical experience, much of it from a time before hospice existed.

I asked LeBaron to share more about his career and the stories he’s said were a salve in coming to terms with his own mortality.

You’ve talked about how you saw death as a child. What does that mean?

Up until about 5 years old, children have not yet adopted the notion of cause and effect. By the time we’re in the third or fourth grade, we’ve learned we live in a world of rules. So we think the way we live our lives determines how our lives end. One might think that a happy person would feel a bigger loss when they’re facing death. That seems logical. But I’ve personally experienced the opposite. I think of it as a phrase: “I could die happy now.” If we have time to accept our death as the end of a happy life, we’re much more ready to accept it.

The title describes death as “ordinary.” How can death bring meaning to our everyday lives?

The book title was partly ironic because every death I witnessed was extraordinary. On the other hand, they are ordinary deaths in the sense that this happens to everyone in some form or another. Put another way, there is really nothing extraordinary about waves. They just wash up and down the shore, but we love them all the same. And they may help create an extraordinary experience. We may go to the ocean to shed our tears and feel a little bit of comfort from that gentle, constant roll in and out. Our deaths are similar in that way: ordinary and extraordinary at the same time.

What guidance can you share with doctors offering end-of-life care? What have you done for patients in their last hours that you think made the biggest difference to them?

What loosens the tongue faster than anything is a safe, sympathetic environment. There are two basic prompts you need to know: Tell me about yourself and tell me more. Ask questions. Invite the exploration of the question and give a response to let them know they’ve been heard: “I can imagine that was very difficult. I really appreciate you letting me into that story.”

It helps the patient feel heard and valued.

The great tragedy is that for the most part, American physicians — the sweetest, most jolly, most interesting people you could want to meet — are on a treadmill, often seeing too many patients to have time for deeper connection.

What value does writing bring to your life, especially as you face your own illness?

Writing is incredibly meaningful in my life. When I was 14, I found it difficult to communicate the way I wanted. I went from a gregarious, playful kid to a reticent teenager.

I also became distant with my brother. But then something quite remarkable happened: We began to write little stories and sometimes letters to each other. They were all about adventure; some of them were entirely fiction, all of them outrageous, and they entertained us and made us laugh. There were times when we would stay up all night, doing nothing but writing stories. It was so much fun, and it drove my parents crazy.

And then, in my 40s, it occurred to me that all the knowledge gleaned from my patients could disappear if I didn’t write any of it down. Since then, it’s been a process of reintegration after feeling like a bomb went off in my house when I learned of my diagnosis.

My wish is that these stories and lessons be used as a guide — to show people how to be present and supportive, how to let people know you hear them and help them get what they need.

Complete Article HERE!

What to Expect from Sex after Pregnancy Loss

By

Sex after pregnancy loss is not just sex. It’s complicated sex.

For starters, there’s the whole grieving thing. Can you – should you – experience pleasure in the middle of grieving a loss? If you had infertility before or after your loss, sex might become a matter of getting down to business. You might be feeling conflicted about your body because of your loss. Maybe you’re trying to come to terms with your postpartum self. Plus – hormones. A lot of them. Oh, and did I forget to mention that you and your partner might be on completely different wavelengths on when, how often, and whether to try for a baby or to prevent?

Like I said. Complicated.

Before we break down why sex after pregnancy loss is complicated – and the phases your sex life might go through – let’s get down to basics.

When it’s safe to have sex after pregnancy loss

You may be wondering when you should start having sex again. The answer to that is largely personal based on all the circumstances of your loss. However, the first step is always to make sure you’re cleared by your provider to resume sex. If you had an uncomplicated, early miscarriage, your provider may OK you to start the next cycle. You need to avoid having sex while your cervix is open to reduce your chances of infection. You should not insert anything into your vagina for two weeks following your miscarriage.

If you had a complicated or later loss, your doctor will likely recommend you wait longer. For stillbirth or live birth ending in a loss, you may need to wait a full six weeks. A general rule of thumb: Wait until your bleeding has stopped. Again, factors such as if you had surgery, how far along you were, and if you experienced complications can affect how long your provider will tell you to wait[1]All About Sex and Intimacy After a Miscarriage or D and C,” Ashley Marcin, Reviewed by Valinda Riggins Nwadike, MD, MPH, Healthline Parenthood, February 29, 2020..

When sex feels safe again.

Sex is vulnerable. And when you are already in a tender state of grief, sex can be triggering. You might be reminded of when you got pregnant with your baby who died. You could be unsettled wanting to get pregnant, but then terrified of getting pregnant. Your relationship might be a little more fragile than it once was. There are many reasons why it can be hard for both you and your partner to be in the mood.

The phases of sex after pregnancy loss

Sex is as individual as the couple. But when it comes down to doing the dance, there are a few stages loss couples often go through when it comes to physical intimacy.

You might hit all of these in rapid-fire succession – or you may skip quite a few. But you’ll probably experience at least some of the following stages:

Don’t even think about it.

You might know you’re in this stage when you make sure your partner never sees you naked, just so they don’t get any ideas. You may feel panic when they start to touch you or instantly shut down. You may not come to bed until they are fast asleep. Or you may just frankly tell them, “Don’t even think about it.” You could feel anything from simple disinterest to complete repulsion. Whatever the cause, whatever the effect, sex is the last thing you’re in the mood for.

Have sex – then cry.

Maybe it’s been a day, a month or a year, but you finally feel ready. Sex feels not only okay, it feels good. You feel close with your partner, and for at least a little while think this was a good idea. And then it happens … you’re triggered. Maybe you’re remembering having sex to get pregnant or having sex while pregnant. Or maybe it’s nothing that cerebral at all. You just know that one minute you were having sex. And the next, you’re crying.

I want to. But physically, I can’t. Or it hurts.

Emotionally you might be ready to hit the sack with your partner again, but physically your body is saying no. Perhaps you haven’t yet gotten the clearance from your doctor. Or you have a wound, such as a tear or incision that is causing extra pain. Whatever the case – if you are emotionally ready for sex, but it’s not safe physically, explore some alternatives to help you achieve the intimacy you want with your partner.

Don’t get pregnant, don’t get pregnant, don’t get pregnant.

Two of your most basic instincts – procreation and survival – go head-to-head in sex after pregnancy loss. On the one hand, you might associate sex with your desire and ability (or inability) to have a baby. And on the other, you may feel like there is absolutely no way you’d survive another loss. The resolution: Strict lockdown on all things baby-making. Condoms? Check. Birth control? Check. Ovulation predictor kits used to prevent sex during ovulation? Check. You want to have your baby. But because you can’t, right now, you just need to focus on surviving.

I feel so numb, I just need something to make me feel anything at all.

When people talk about grief, they almost always associate it with sadness. But you know that sadness is sometimes preferable to not feeling at all. Sex provides a bit of an escape from the numbing. For a short time, you can feel something, anything.

I have a super complicated relationship with my body right now. 

Chances are, you want to feel sexy and confident in your skin. But a loss of a child in pregnancy or after can seriously mess with your relationship with your body. You might feel angry at it for “failing” you. You might feel like it doesn’t deserve to feel joy or pleasure when your baby is gone. Or maybe you are just dealing with your body looking and feeling completely different. You may have scars that remind you of your loss that you’d rather not expose. Sex might expose areas you are already feeling particularly vulnerable.

Ready to try again for a baby.

And by ready, we really mean not ready at all – but you figure it’s time to start. If you didn’t deal with infertility before, this stage might look a lot like casual sex. Just without any protection. What is not the same, however, is the obsessive thinking afterward about whether “this was it.” And before, you likely weren’t quite this compulsive over the next two weeks checking for pregnancy signs.
Check ovulation. Text husband: “Sex, now.” Transaction occurs. Legs in the air. Then do it all over 48 hours later.

If you don’t have time for casual baby-making, or you have dealt with infertility before, your version of sex after loss might look a lot more regimented. And frankly, not as fun. Because conceiving again usually means having sex regardless of your current mood. On the one hand, this focus on sex and timing gives you something to focus on besides your loss. It makes you feel like you have some measure of control. On the other hand, it often feels like a transaction, one your mind and heart can be absent for, as your body only is required. While regular sex can be good for your partnership, scheduled sex like this can be draining for you both.

I want sex because I need to be close to my partner.

You and your partner are both grieving, and one thing you need right now is to feel a close connection. You need to know that somehow, you’ll get through this together. Both men and women can find comfort in an act of intimacy during grief. Sometimes, it’s the one way you can communicate your love for each other when words fail.

Sex after pregnancy loss is complicated.

As you work to figure sex after loss out, give you and your partner lots of grace. You have the right to wait however long you need to or want to. Have clear communication with your partner on your expectations and show your partner the same respect. It can take a long time to physically, mentally, or emotionally be ready to have sex after pregnancy loss. Give it time.

While it is complicated, sex after pregnancy loss is worth having.

Complete Article HERE!

In New Doc ‘Last Flight Home’, a Film-Maker’s Dad Gets His Final Call

— Ondi Timoner’s sweet, sad film about her father shows what a good death can look like

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You have to be in a certain mood to watch Ondi Timoner’s new documentary, Last Flight Home, which plots out the final 15 days of her 92-year-old father’s life. Hmm, do you want to zone out to a Parks and Rec marathon tonight, or watch a family come to terms with their patriarch’s decision to instigate an assisted death and end his overwhelming physical exhaustion and pain? It might be a hard sell, but for those who can bear to think a little deeper about the nature of existence – and the end of existence – the rewards are rich.

As the film opens, we join the Timoners in the aftermath of what we can only imagine to have been a long and difficult conversation: whether or not to support Eli – who was paralysed in 1982 and is now suffering from congenital heart disease and having difficulty breathing – in his decision to take advantage of the California End of Life Option Act. (There’s no debate about how Eli feels, as he somewhat starkly puts it: “I just want to be in the ground.”)

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By the time we meet them, Eli’s wife, Lisa, and their three grown-up children, Rachel, David and Ondi – who made her name as a film-maker with the very different but also surprisingly intimate documentary Dig!, about the divergent paths of two 1990s indie bands, the Dandy Warhols and the Brian Jonestown Massacre – have come round to his way of thinking, and are going to give their father the best send-off they can. All Eli has to do is tell the doctor his decision, and a 15-day countdown – which serves as chapter markers for the film – to his legally self-administered fatal dosage begins.

What happens next is quite extraordinary, and raises so much that is valid and instructive about how we live and how we die that it’s hard to know where to begin. In a series of Zoom calls and reunions at the bedside of the couple’s home in Pasadena, California, Eli says goodbye to the people who have meant something to him in his life. His colleagues, his friends, his care-givers, his extended family. He tells them he loves them, they tell him they love him right back. He fine-tunes his obituary, and makes quips about his bunk-bed style burial plot, in which he’ll await his wife’s arrival: “That’s heaven. I love Lisa on top.” What a thing, to look death in the eye and still make terrible dad jokes. Eli must be some guy.

And it turns out he is, or was. Now we get Eli’s back story, the part that Ondi is so keen to relay (something that Robert Downey Jr is also doing for his dad in his forthcoming Netflix documentary, Sr). Having set up an airline, Air Florida, in 1972, Eli became a hugely successful businessman and personality (that picture of a young King Charles looking bashful in a polo shirt? Zoom out and it’s Eli and Lisa flanking him on either side) only to overstretch himself and lose it all. We also find out more about the circumstances of his paralysis (it happened, somewhat shockingly, because of a massage), which caused a huge shift in the dynamics of the family as Lisa and the children rallied around to support him as he had once them.

film maker ondi timoner with her father eli in the days before his death
Film-maker Ondi Timoner with her father, Eli, in the days before his death

What makes the film so bittersweet, is that while Eli’s family is saying goodbye, we as viewers are just getting to know him: getting familiar with the nuances of his relationships with his children, who are inspirationally – and to frigid English sensibilities, a little freakishly – demonstrative of their affection for him; getting a sense of his steady morals and kind heart (OK it’s not the most objective biography, but you’re prepared to let it slide); getting the odd exasperated aside from Lisa, a Bronx native, who raises her eyebrows to the camera as Eli, with just days to live, listens to a droning automated voice read out a list of his bank transactions.

And although the film makes no attempt to discuss the rights or wrongs of assisted suicide – it’s just not what’s being explored here, and that’s fine – you can’t help thinking, as the days tick closer, that Eli’s done something right. He’s got to see his children honouring him in the ways they are best able – David’s written his obituary; Rachel, a rabbi, is preparing his funeral; and Ondi is making this film – and, courtesy of some poison in a plastic glass with a drinking straw, he’s going to be able to show himself to the door. It’s hard, it’s sad, but you can’t help feeling that there are lessons to be taken from the Timoner family’s experience, and that, ultimately, a good death was had by all.

Complete Article HERE!