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"Wisdom is not the product of schooling, but of the lifelong attempt to acquire it"

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Medicine

“The State of Medicine” Margaret McCartney

This one’s for you if…you are worried or interested in the future of the NHS

It is easy to think, with the constant barrage of bad news stories in the press, that the NHS is on its knees. That it is not fit for purpose. That it won’t survive the crippling co morbidities of a population that is ageing, increasingly obese has more complex needs than ever before. Add a dash of neoliberalism, that the effects of smoking and obesity are the responsibility of individuals not society as a whole and you might begin to think it’s time for a new system. A few years ago, I now admit with shame, I probably would have agreed.

The whole purpose of this blog is to celebrate the power of reading. The power of learning, engaging, debating and changing your mind. Politicians out there- it really is possible to change your mind based on expanding your knowledge- you should try it some time.

Books such as this, so excellently written by McCartney, make you realise the value of the NHS. Make you realise that a huge proportion of its workload comes from a lack of responsibility by other areas of society. The alcohol industry. The smoking industry. Austerity’s effects on social care. Lack of follow up by private healthcare organisations. Worst of all? Lack of evidence in policy making. McCartney talks us through a list longer than a long person’s arms of policies put in place for political gains which end in money down the drain and no improvement for patients.

One particularly nonsensical part of the way the NHS is currently run is as follows. Targets are set. If a hospital doesn’t meet them, they are fined. (Regardless of the possibility that missing the targets could be due to insufficient funds/staff). Staff also have to write reports on the missed targets. So the hospital/trust which is doing badly is left with an increased workload and reduced funds. From which point they are supposed to improve their rate of hitting the targets?!

I like to end on a high. So how can we ‘save’ the NHS? Let’s realise that problems like obesity occur because we live in a highly obesogenic society- communities lack safe and accessible places to exercise, the nature of our society encourages us to sit on our backsides for an unprecedented proportion of the day, and shops offer us food that is ridiculously calorific, with unbelievable levels of sugar, and put the ‘bad stuff’ on promotion. Let’s encourage politicians to use evidence when debating and implementing healthcare policy. Let’s try the insurmountable task of holding them to account when they don’t. Doctors work day in day out using evidence to provide high quality care for their patients. And I don’t think it’s unreasonable to expect the same from those in government.

Warning: the following content may be infuriating.

Aneurin Bevan 1946 House of Commons “Medical treatment should be made available to rich and poor alike in accordance with medical need and no other criteria. Worry about money in a time of sickness is a serious hindrance to recovery, apart from its unnecessary cruelty. The essence of a satisfactory health service is that the rich and poor are treated alike. Poverty is not a disability and wealth is not an advantage.”

Mid staffs crisis and understaffing- trust was told to save £10million and a CQC report “found a shortfall of 120 whole time equivalent nursing posts”. “The nurse [working in mid staffs at the time] described how managing other nurses placed her under pressure to lie in the records, having been told that if they didn’t meet the targets, heads would roll and A&E would be closed, with everyone losing their jobs” p32

“Social inequalities aren’t caused by laziness, or by people choosing to have a poorer quality of health. Instead, they arise from circumstances partially or completely out of poeple’s control, which have small, cumulative effects on their life chances, possibilities, directions and, ultimately, quality of life and time of death. Caring for relatives, going to an overstretched school, having a lack of good childcare, living in an area of greater pollution- all these add together and translate into inequalities becoming deadly.” p55

Money matters.
“In the US, a regular non means tested income to disadvantaged Native Americans was associated with benefits to children that was still detectable a quarter of a century later.” p56
“if everyone drank responsibly the alcohol industry would lose 40% of its sales and some estimates are higher. In formulating its alcohol strategy, the Government must be more sceptical about the industry’s claims that it is in favour of responsible drinking.” p62
“In 2013, I read a report by PwC purporting to show that technology in the NHS could save money. I found out that the report itself had cost £75,000, yet it was fatally flawed..making entirely non evidence based statements suggesting that large quantities of patients could be safely managed at home rather than in hospital.” p142
“Recurrent reforms from the 1990s onwards have been predicated on the belief that money is the best motivator for change. This had resulted in too much medicine- treatment by rote rather than because it matters to you, the individual patient. The seams of vocation and ethics are pulled at by the incentives which request compliance, not the interrogation of suitability for the individual.” p199

Kenneth Arrow, Professor of economics, “I live in Silicon Valley, where there are loads of startups- at least half of them fail. That’s normal; it’s part of a competitive system. It’s a problem if it happens in a medicsl system, because it interrupts care, and it’s deleterious to an ongoing relationship; it’s bad for people who were getting that service. But the fact that they fail is the way the market system works. Next time around, they’ll guess their costs better. But if you are right in the middle of medical care and the supplier goes broke, you have adjustment costs. It’s not the same if I’m buying fruit and they go out of business- well, I can go to a nearby store…I’m so surprised that a country that has contained its costs and achieved good healthcare should be worried.” p88

Paraphrasing US journalist H.L.Mencken “For every complex problem- such as how best to organise medical staffing at weekends in the NHS- there is an answer that is simple, clear and wrong. This needs unbiased minds and clear statistical understanding not an election manifesto promise to be driven through no matter the cost.” p93

NHS always picks up the tab. Circle tendered for a 10 year contract to run a hospital and pulled out after 3 citing that demand for A&E had risen. “the NHS can never transfer the operational risk of running a hospital, leaving the taxpayer exposed should the franchise fail…Additionally, the National Audit Comittee pointed out that under the terms of the contract, Circle would be responsible for only some of its debt- the taxpayer would be ‘left exposed’ to pick up the rest. Not only that, the chief exec was given a generous redundancy package and left to work in another NHS role.” p149

“We need our NHS to be run on evidence, moral value and humanity. We need to ask for the right evidence, out evidence before policy, make no policy without cognisance of the evidence and always consider the harms.” p210

“We also need the option of rejecting short term political policy making in favour of making mature cross party decisions drawing on evidence and expertise, freeing the NHS from the legacy of damage through the short-term need for political parties to claim successes for themselves or blame failure on others.” p231

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“The Reason I Jump: One Boy’s Voice from the Silence of Autism” Naoki Higashida

This one is for you if… you have always wanted to ask somebody with autism questions about how they feel and why they behave as they do.

The book was written when Naoki was 13, after he learnt to spell out words with an alphabet grid. It was translated by David Mitchell and his wife who have a son who has autism and the introduction is a touching insight into what the book meant to him, and how much it helped him after his son’s diagnosis, in stark contrast to other books on the topic.

Naoki writes in such a way as to clearly explain his thoughts and feelings. One of my favourite things about this book is his suggestions of what we can do to ease the challenges of those with autism, based on his own experiences. By the end of the book you come to realise that people with autism are not so different to the rest of us, and that just a little bit of effort here and there would make life a lot easier for those affected. I’m already looking forward to reading Naoki’s follow up book, about navigating teenage life with autism. (Fall Down 7 Times Get Up 8).

It was interesting to read the book at the same time as watching the BBC drama “The A Word” which shed light on the family dynamics around a child with autism- they certainly struggle to follow Naoki’s advice not to stress themselves out.

Thought experiment into autistic life “your mind is in a room where twenty radios, all tuned to different stations, are blaring out voices and music. The radios have no off-switches or volume controls, the room you’re in has no door or windows, and relief will come only when you’re too exhausted to stay awake.” p2

“people with autism must survive in an outside world where meltdowns and panic attacks are viewed as tantrums, where disability allowance claimants are assumed by many to be welfare scroungers and where British foreign policy can be described as ‘autistic’ by a French minister.’ p4

“When you know that your kid wants to speak with you, when you know that he’s taking in his surroundings every bit as attentively as you non-autistic daughter, whatever the evidence to the contrary, then you can be ten times more patient, willing, understanding and communicative, and ten times better able to understand his development.” p10

“Unlike the words we’re ordered to say, repeating questions we already know the answers to can be a pleasure- it’s playing with sound and rhythm.” p24

“True compassion is about not bruising the other person’s self-respect. That’s what I think, anyway.” p30

“we really badly want you to understand what’s going on inside our hearts and minds. And basically, my feelings are pretty much the same as yours.” p38

“A person who’s looking at a mountain far away doesn’t notice the prettiness of a dandelion in front of them. A person who’s looking at a dandelion in front of them doesn’t see the beauty of a mountain far away. To us, people’s voices are a bit like that. It’s very difficult for us to know someone’s there and that they’re talking to us, just by his or her voice.
So it would help us a great deal if you could just use our names first to get our attention, before you then start talking to us.” p52

Asked what the worst thing about autism is “I ask you, those of you who are with us all day, not to stress yourselves out because of us. When you do this, it feels as if you’re denying any value at all that our lives may have- and that saps the spirit we need to soldier on…the thought that our lives are the source of other people’s unhappiness, that’s plain unbearable.” p71

Why do people with autism need cues and prompts? “In the same way as you don’t walk over the crossing until the light turns green, I can’t ‘switch on’ the next action until my brain receives the right prompt. Doing the next action without obeying ‘the prompt rule’ is terrifying. It’s enough to make me lose the plot completely.” p143

“Please keep battling alongside us. We are the ones who are suffering the most in these scenes, and badly badly want to free ourselves from our own chains.” p143

“The Man who Mistook his Wife for a Hat” Oliver Sacks

This one’s for you if you’re fascinated about how the brain works, what makes us who we are, and how we change when things go wrong up there.

Sacks is a great storyteller. And he’s got some great stories to tell- from autism to epilepsy to dementia and everything in between. But he doesn’t make patient histories into stories to make them more interesting or easy to read. I think he does it to make a very powerful point. The human being that sits in front of a doctor is not defined by being a patient. They are not defined by their diagnosis. They are not defined by their group of symptoms. They are not defined by the things they cannot do. And neither are they defined by what they can do. We are defined by who were are, by our personal qualities, by how we interact with people and things, by our passions, our fears, and our past experiences. And that is what Sacks’ stories have taught me.

His story about a Tourette’s sufferer (quote below from p105), makes another interesting point. Particularly with neurological and psychiatric diseases, the symptoms can become a part of who you are, and therefore any change that treatment will bring about will require a period of adjustment.

People often debate if medicine is a science or an art. Most likely it requires both. But the final thing I learnt from Sacks was to shift your focus away from what someone cannot do. Think of what you could do to help them do it. Try to forget the accepted way of doing things, and try to do it or to see it your patient’s way. His exploration of some of his patients in this way often revealed talent for, or communication through, forms of art such as poetry, music and drawing (last 3 quotes).

“To restore the human subject at the centre- the suffering, afflicted, fighting, human subject- we must deepen a case history to a narrative or tale: only then do we have a ‘who’ as well as a ‘what’, a real person, a patient, in relation to a disease- in relation to the physical.” x

“You have to begin to lose your memory, if only in bits and pieces, to realise that memory is what makes our lives. Life without memory is no life at all…Our memory is our coherence, our reason, our feeling, even our action. Without it, we are nothing…(I can only wait for the final amnesia, the one that can erase an entire life, as it did my mother’s…)” Luis Bunuel p25
“Jimmie both was and wasn’t aware of this deep, tragic loss in himself, loss of himself. (If a man has lost a leg or an eye, he knows he has lost a leg or an eye; but if he has lost a self- himself- he cannot know it, because he is no longer there to know it.)” p38
On proprioception which he describes as “unconscious sensory flow from the movable parts of our body”. In other words its how our body knows where the different bits of our body are at any one time.
“What is more important for us, at an elemental level, than the control, the owning and operation, of our own physical selves? And yet it is so automatic, so familiar, we never give it a thought.” p47
“This “proprioception” is like the eyes of the body, the way the body sees itself. And if it goes, as it’s gone with me, it’s like the body’s blind. My body can’t “see” itself it it’s lost it’s eyes, right? So I have to watch it- be its eyes.” p52
“She has no words, no direct words, to describe this bereftness, this sensory darkness (or silence) akin to blindness or deafness. She has no words, and we lack words too. And society lacks words, and sympathy, for such states.” p55
“And who could have dreamed that in this blind, palsied woman, hidden away, inactivated, over-protected all her life, there lay the germ of an astonishing artistic sensibility (unsuspected by her, as by others) that would germinate and blossom into a rare and beautiful reality, after remaining dormant, blighted, for sixty years?” p68
“He had not been ready to give up his Tourette’s and (I cannot help thinking) might never have been ready without those three months of intense preparation, of tremendously hard and concentrated deep analysis and thought.” p105
“You are free, you have a natural balance: we must make the best of an artificial balance.” p107
“The clinic, the laboratory, the ward are all designed to restrain and focus behaviour, if not indeed to exclude it altogether. They are for a systematic and scientific neurology, reduced to fixed tests, and tasks, not for an open, naturalistic neurology. For this one must see the patient unselfconscious, unobserved, in the real world, wholly given over to the spur and play of every impulse, and one must oneself, the observer, be unobserved.” p128
On a similar note: Tests “only sow us deficits, they do not show us powers; they only show us puzzles and schemata, when we need to see music, narrative, play, a being conducting itself spontaneously in its own natural way.” p191
“The sudden onset of Irish songs in the night, the sudden activation of musical memory-traces in the cortex were, apparently, the consequence of a stroke, and as it resolved, so the songs ‘resolved’ too.” p141
“The forced reminiscence induced by L-Dopa, cortical probes, migraines, epileptics, crises, etc., would seem to be, primarily, an excitation; while the incontinently nostalgic reminiscence of old age, and sometimes of drunkenness, seems closer to a disinhibition and uncovering of archaic traces. All of these states can ‘release’ memory, and all of them can lead to a re-experience and re-enactment of the past.” p160
“She needed the world re-presented to her in verbal images, in language, and seemed to have little difficult following the metaphors and symbols of even quite deep poems, in striking contrast to her incapacity with simple propositions and instructions.” p188
Talking of patients with severe learning disabilities who may be “unable to perform fairly simple tasks involving perhaps four or five movements or procedures in sequence, can do these perfectly if they work to music- the sequence of movements they cannot hold as schemes being perfectly holdable as music, i.e. embedded in music.” p195
Talking of a patient with a learning disability “who found in the serene and magnificent architectonics of Bach a sensible manifestation of the ultimate harmony and order of the world, wholly inaccessible to him conceptually because of his intellectual limitations.” p214
“He can draw a flower or a fish with remarkable accuracy, but he ca also make one which is a personification, an emblem, a dream, or a joke. And the autistic are supposed to lack imagination, playfulness, art!” p242

“Do No Harm” Henry Marsh

This one is for you if you’re interested in the life of a brain surgeon that is happy to discuss his mistakes and criticise the NHS.

As patients, we tend to put our doctor(s) on a pedestal. Maybe it’s because we want to believe they are going to solve our problems, regardless of whether they can. Maybe it’s because so many patients can’t imagine the responsibility of being a doctor, so think that they must be ‘super human’ in some way. Whatever the reason, we often don’t want to hear about things going wrong. And we are quick to criticise when they do, even if we have been warned multiple times of the risks involved in a certain procedure. One of the things I loved most about this book was that Marsh was so comfortable with appearing human. Mistakes are made by people all the time. Some are big, some are small. Some have drastic consequences, others go unnoticed. But while we can easily recognise that mistakes are a part of our imperfect human nature, we don’t often extend this hand of understanding to medical professionals. Having retired in 2015, Marsh has a wealth of experience of working in the NHS which allows him to take you step by step through the introduction of increasing bureaucracy and government targets that have sadly become so dominant today. And for those that love a bit of gore, there are some fantastic descriptions of surgery itself in this delightfully short and easy to read book.

“The idea that my sucker is moving through thought itself, through emotion and reason, that memories, dreams and reflections should consist of jelly, is simply too strange to understand.” p1

“She would be added to the list of my disasters- another headstone in that cemetery  which the French surgeon Leriche once said all surgeons carry within themselves.” p5

“‘Informed consent’ sounds so easy in principle- the surgeon explains the balance of risks and benefits, and the calm and rational patient decides what he or she wants- just like going to the supermarket and choosing from the vast array of toothbrushes on offer.” p36

“As patients we are deeply reluctant to offend a surgeon who is about to operate on us.” p37

“I dislike telling patients that their operation has been cancelled at the last moment just as much as I dislike telling people that they have cancer and are going to die. I resent having to say sorry for something that is not my fault and yet the poor patients cannot very well be sent away without anybody saying something.” p97/8

“The junior doctors work such short hours that they are desperate for even the most basic surgical experience.” p119

“how strange it is that I should now be listening to a young man with a background in catering telling me that I should develop empathy, keep focuses and stay calm.” p129 This was after Marsh had worked as a doctor for 30 years!

“Life without hope is hopelessly difficult but at the end hope can so easily make fools of us all.” p139

“Surgeons must always tell the truth but rarely, if ever, deprive patients of all hope…Nevertheless, sooner or later, most of the patients, like Helen, will reach the point of no return. It is often very difficult for both doctor and patient to admit that it has been reached.” p142

On the old X Ray system of hanging them up: “the system was completely reliable and quite unlike the computers that now dominate my working life.” p156

 

 

“Inside the O’Briens” Lisa Genova

This one’s for you if you’re interested in Huntington’s disease and its effect on the patient and their family.

I love Lisa Genova. If you haven’t heard of her, I would thoroughly recommend “Still Alice”, “Left Neglect” and “Love Anthony”. She has a PhD in neuroscience and I think that puts her in a fantastic position to write novels about patients diagnosed with Alzheimer’s, Neglect, Autism and Huntington’s respectively. “Inside the O’Brien’s” explores the effect of Joe, a policeman in an Irish community in Boston, being diagnosed with Huntington’s disease. The book really makes you feel that you are on that tumultuous journey with the patient from their first symptoms through to diagnosis and on to acceptance. Huntington’s is particularly interesting to read about as it is a genetic disease with autosomal dominant inheritance which means that if one of your parents has it, each child has a 50:50 chance of also having the disease. As you can imagine, a single diagnosis can quickly grow into a family of patients, each with their own ticking time bomb. The question of whether or not you would want to be tested for the disease if one of your parents tested positive is one that seems impossible to answer. As a fan of yoga, I liked how yoga gave one of the characters strength to deal with this tragic situation. If you’d like to learn more about Huntington’s, or to donate to a charity which helps those having to deal with it here are a couple of links: http://www.hdscotland.org , http://hda.org.uk.

“If you bring forth what is within you, what you bring forth will save you. If you do not bring forth what is within you, what you do not bring forth will destroy you” The Gospel of Thomas, saying 70. Epigraph

“People didn’t have to involve their parents back then. Kids feared their parents more than they did the authorities.” p12

“So it’s all temporary from the start, and they don’t care about where they live as much as people do when they know they’re staying until they get put in a box.” p13

“People don’t forget anything, and who you’re from is as important as who you are.” p17

“Huntington’s destroyed her ability to walk and feed herself. It mutilated her good mood, her patience and reasoning. It strangled her voice and her smile. It stole her family and her dignity, and then it killed her.” p101

“She’d like to talk about JJ being HD positive, how she thinks of him differently now, as if he’s someone who’s already sick or damaged or even contagious, how she’s kind of afraid of him, which is ridiculous, but she can’t help it.” p153/4

“His fingers are flinching, playing Mozart on an invisible flute over the buttons of his uniform shirt, ignoring Joe’s commands, refusing to cooperate.” p201

“It was the humane thing to do. Joe takes note of the word human in humane, and yet that kind of “human” compassion is reserved only for animals, not for people.” p268 The context of this quote was their dog being put down.

The unfortunate pros/cons that come with so many modern medications: “So let’s give people facing a brutal terminal illness who probably already exhibit depression a drug that can exacerbate that depression and cause suicidal ideation. That’s a great f*****’ idea. But if Joe wants to treat his chorea, and he does, Tetrabenzine is the best and only thing they’ve got.” p285

“You can be in Downward Dog, hating every second of it. Or you can be in this pose, peaceful and non-reactive, breathing calmly. Either way, you’re in this pose. You decide the quality of your experience. Be the thermostat, not the temperature.” p286

“It’s as if the command centre for voluntary movement in his brain has been hijacked by a gang of naughty kids, and they’re in there maniacally laughing as they randomly, repetitively flip the switches.” p295

“Lotus flowers blossom while rooted in mud, a reminder that beauty and grace can rise above something ugly.” p333

“Cutting for Stone” Abraham Verghese

This one’s for you if you’re looking for a brilliant novel.

You know that feeling when you’re between books, and you just really want a novel to jump out and grab you? Well that’s what Cutting for Stone did for me. It has all the components of a great novel: triumphs, disasters, difficult relationships and moral dilemmas. Throw in a huge helping of beautiful language that a student of science can but marvel at, and its a winner. It is the story of conjoined twins born in Ethiopia in 1954- how they came to be, what happened as they grow up, and how their lives diverge and converge again. The author was born in Ethiopia in 1955 to Indian parents, where he started his medical education, before leaving to go to America because of civil unrest. This leaves you wondering how much of the story is autobiographical, to which I found some answers here. In my search for the answer to this question I also found this where I discovered how much the author wanted to show a different side of medicine to that which we see on TV.

Cutting for Stone is a longer book than the subjects of my previous posts so I’ve decided to split the quotes up into four themes. I would have loved to have given you more examples of his language but I felt like I had too many already- you’ll have to read the book!

MEDICINE

“You live it [life] forward, but understand it backward. It is only when you stop and look to the rear that you see the corpse caught under your wheel.” p9 In the context of a morbidity and mortality hospital.

“It was often the second mistake that came in the haste to correct the first mistake that did the patient in.” p116

“A rich man’s faults are covered with money, but a surgeon’s faults are covered with Earth.” p203

“When you are driving, you look to see where you are going, but when you make an incision, you look to see where you have been.” p494

LANGUAGE

“The city was at once dead and yet in continuous motion, like a blanket of maggots animating a rotting corpse.” p29

DIFFERENT CULTURES/COUNTRIES

“Its [a child] head had been shaved to leave a traffic island tuft in front; Hema was told when she first came to Ethiopia that this strange haircut was so that if God chose to take that child (and He took so many), the tuft gave Him a handle by which to lift it to heaven.” p91

“It was as if nothing I’d ever done in my life prior to this counted. As if my past life was revealed to be a waste, a gesture in slow motion, because what I considered scarce and precious was in fact plentiful and cheap, and what I counted as rapid progress turned out to be glacially slow.” p464

“Judging people to be beyond help never crossed the minds of police, firemen, or doctors here [America].” p477

“Whatever America needs, the world will supply. Cocaine? Colombia steps up to the plate. Shortage of firearms, corn detasselers? Thank God for Mexico. Baseball players? Viva the Dominican Republic.” p491

PROFOUNDITIES

“We come unbidden into this life, and if we are lucky we find a purpose beyond starvation, misery, and early death which, lest we forget, is the common lot.” p6

“What she couldn’t bear was the feeling that something vital had been plucked out and uprooted from her chest when we walked away…There was, she saw now, a void in her life that she’d never known existed.” p28

“Wasn’t that the definition of home? Not where you are from, but where you are wanted?” p95

“What a bad idea it had been to give the Bible to anyone but priests, Ghosh thought. It made a preacher out of everybody.” p139

“How we treat the least of our brethren, how we treat the peasant suffering with volvulus, that’s the measure of this country. Not our fighter planes or tanks, or how big the Emperor’s place happens to be.” p184

“Years later, when Idi Amin said and did outrageous things, I understood that his motivation was to rattle the good people of Greenwich mean time, have them raise their heads from their tea and scones, and say, Oh, yes. Africa.” p288

“How could they find an enemy they couldn’t see, in a countryside where they didn’t speak the language and couldn’t tell civilians and sympathisers from guerrillas?” p444

“Being Mortal” Atul Gawande

This one’s for you if you’re interested in how western medicine treats elderly patients, and approaches palliative care. But really this one is for everyone, because we all die, and we should all prepare for it as best we can.

“Being Mortal” was the most thought provoking book I have read in years. As an aspiring medic, it made me question the purpose and meaning of the profession. It will make you realise, or confirm your belief, that medicine shound not be about elongating life at all costs. Moreover, it presents fascinating alternatives to conventional care, such as bringing animals into nursing homes for the residents to take care of (p125 below) and combining the need for after school care for children and the need of the elderly for company and stimulation. I realise that I have included quite a lot of quotes here, but I think each and every one is important and it’s worth getting to the bottom of this post!

“In my grandfather’s pre modern world, how he wanted to live was his choice, and the family’s role was to make it possible.” p16

“Old age is a continuous series of losses.” p55

“He had one great solace…that she’d got to spend her last few weeks in peace at home in the warmth of their long love, instead of up on a nursing floor, a lost and disoriented patient.” p59

“As medicine became more powerful, the modern hospital brought a different idea…You checked in any gave over every part of your life to doctors and nurses: what you wore, what you ate, what went into the different parts of your body and when.” p70

“She woke when they told her, bathed and dressed when they told her, ate when they told her…like she was in prison for being old.” p73

“If there’s anything a decent nursing home is built for, it is safety…The trouble was that she expected more from life than safety.” p74

“Your chances of avoiding the nursing home are directly related to the number of children you have…having at least one daughter seems to be crucial to the amount of help you will receive.” p79

“As your horizons contract…your focus shifts to the here and now, to everyday pleasures and the people closest to you.” p97

“Many of the things that we want for those we care about are things that we would adamantly oppose for ourselves because they would infringe upon our sense of self” p106. This is written in the context of when children become in charge of their parent’s care. The top priority for the child when looking at nursing homes tends to be safety, and as above, safety is not what makes people happy.

“If place of boredom, they [living things] offer spontaneity. In place of loneliness, they offer companionship. If place of hopelessness, they offer a chance to take care of another being” p125

A systematic campaign to encourage doctors to discuss the end of life, involved the questions: “Do you want to be resuscitated if your heart stops? Do you want aggressive treatment like intubation and mechanical ventilation? Do you want antibiotics? Do you want intravenous feeding if you can’t eat?” p179

“People die only once. They have no experience to draw on. They need doctors and nurses…who will help people prepare for what is to come- and escape a warehoused oblivion few really want.” p188

“Instead of holding on to the lifelong identity that was slipping away from him, he managed to redefine it.” p210

“Technological society has forgotten what scholars call the “dying role”…people want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms…the way we deny people this role, out of obtuseness and neglect, is cause for everlasting shame.” p249

“I have seen the damage we in medicine do when we fail to acknowledge such power is finite and always will be…We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being.” p259

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