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How improving the experience of hospital death can help redesign healthcare

 

The residents always approached my father as if he was a person and there weren’t any divisions between them. They didn’t come in and say, “I’m Doctor so and so.” There wasn’t any kind of separation or aloofness. They would sit right on his bed, hold his hand, talk about their families, his family, golf, and sports. From Steinhauser et al.

The chances are when the times comes you will die in hospital. It may be sudden or it may be expected and either you will die a good death or the experience for you and those who are left to grieve will make a bad situation worse. Charles Garfield put it like this:

A good death is no oxymoron. It’s within everyone’s realm of possibility. We need only realize its potential and prepare ourselves to meet it mindfully, with compassion and courage

John Costello concluded his research on patient experiences of death as follows:

The findings also challenge practitioners to focus attention on death as a process, and to prioritize patients’ needs above those of the organization. Moreover, there is the need for guidelines to be developed enabling patients to have a role in shaping events at the end of their lives. John Costello

Therefore, the needs of the ‘organisation’ may impact adversely on the experience of death. These might include the need to adhere to routines such as ward rounds, meal and medication time on open wards which may make it difficult to cater to the needs of the family when the patient dies.

A good place to start with innovation is to consider what, how and when things go wrong. Costello’s interviews with nurses identified several determinants of a bad death:

  • Sudden, unexpected or traumatic deaths especially soon after admission
  • Death other than on the ward
  • Family not aware of impending death or family conflict a major feature
  • Lack of dignity or respect
  • Diagnosis uncertain

Therefore, the key features are the circumstances surrounding the death. The consequences are far from trivial:

Dying patients with unresolved physical and psychological problems, such as pain, nausea, vomiting or spiritual distress, and who were unresponsive to treatment or nursing care, were invariably regarded as experiencing bad death. John Costello

This begs the question why not prepare for death in every hospital admission especially where death is a less than distant possibility. The majority of hospital deaths occur in those over 75 years of age. How is the team prepared if there is a death on the ward expected or otherwise, whether it’s convenient to the routines or not?

Achieving seven goals appear to mark a ‘good’ death:

  1. The patient should be physically, psycho-socially, and spiritually pain-free
  2. Recognize and resolve interpersonal conflicts.
  3. Satisfy any remaining wishes that are consistent with their present condition.
  4. Review their life to find meaning.
  5. Hand over control to a trusted person, someone committed to helping them have the kind of death they desire.
  6. Be protected from needless procedures that serve to only dehumanize and demean without much or any benefit.
  7. Decide how social and how alert they want to be.

Many of these goals are in the purview of the doctor and her prescription pad, others require all those involved to help prepare for an event that will impact on everyone associated with the patient. Healthcare is now a team effort and nowhere more than at the end of life.

When physical symptoms are properly palliated, patients and families may have the opportunity to address the critical psychosocial and spiritual issues they face at the end of life. Steinhauser et al

The point is if we prepare every hospitalised patient who may conceivably deteriorate and die as if we were preparing them and our units for that experience we will treat all patients with greater dignity. That’s the foundation of good outcomes for healthcare staff and the dying.

Picture by Alyssa L. Miller

Why understanding the patient’s worldview matters

4162021447_2d1bc7c61a_zDad followed me into the consulting room speaking on his mobile phone. Grandmother was carrying the child and walking in his wake. At first, I was a bit irritated that the man was speaking on the phone even as he was seeking my advice but then I heard what he was saying and realised I understood the foreign words:

I’ll call you back in 10 mins, I’m with the doctor now, don’t worry.

It wasn’t what he was saying it was how the words were phrased. It was clear that the caller was someone with whom he shared intimacy. It was like overhearing a private conversation in their home.  The child, who was 2 years old was handed to her father. She turned to look at me suspiciously. Then burst into tears and made to jump back into grandmother’s arms. Then quietened again as long as I kept my distance.

The history was typical of a respiratory tract infection, the child woke with a fever, was coughing and had a runny nose. There were no signs to speak of other than a fever and inflamed upper airway. I asked questions which dad relayed to Grandmother. She provided answers and he translated.

I’m not sure when it was that it became apparent to them that I understood their exchanges.I hadn’t spoken the language in 30 years but I understand it perfectly. Dad relaxed visibly.

The concerns came pouring out- she’d had a sleepless night. Mum was at home worried. Because the child had a fever dad thought she needed antibiotics. As head of the household whatever was approved by him would be accepted by the extended family waiting anxiously at home. The fact that he and not mum was there underlined their concern. The untimely phone call made sense. He told me it  was always hoped that he would become a dentist but things hadn’t worked out and now he owned a shop. The family knew he was interested in medicine and so they deferred to him in what should be done when someone was sick.

He spoke to me in Gujarati. I struggled to respond in kind so I gave up and spoke in English. It didn’t compute to him I looked like him but sounded like a local. It was so much easier to explain the nature of the illness and the need for regular symptom management and what to do if the child didn’t respond. In a world where this family must feel out of place, this must have been a welcome moment of connection. What better time to feel understood than when you are frightened? In designing interventions to respond to the perceived pressure to prescribe or refer perhaps the most powerful is to connect with the patient’s worldview in a way that makes him feel seen and understood. To deal with the problem in the context in which it is presented.

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Age, occupation and prognosis may filter what the patient hears

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I’m booked in for a check up tomorrow with the doctor who looked after me and called the ambulance so I can thank her in person. My bike doesn’t seem to have a scratch! Tony and Wayne

The experience of an illness, accident or emergency can heighten the trust in a medical practitioner. Primary prevention is more problematic.  People who are asymptomatic and being urged to alter their lifestyle or take antihypertensives may be more dubious:

Well I mean would you trust them with your life? Or would you trust them you know, when you’ve got a bit of a cough? You know, there’s a bit of a difference. You can trust somebody to take a splinter out or whatever but ah, I mean, even if you’ve made some sensible comments, if you’re going to start playing around with anything serious, you know, brain or the heart or whatever, you’d like to know a bit more about it—you’d like to see him in action and…Meyer et al

Three factors appear to influence the attitude; age, socioeconomic status (SES) and prognosis. Our research was conducted with reference to cardiovascular disease. Generalisations in medicine are not safe however these data offered some helpful pointers.

Older patients, lower SES patients and patients with established pathology are more likely to trust, and are less likely to question medical advice. Meyer et al

Our research also suggests that:

Participants who perceived themselves at risk of a poor or uncertain outcome were unlikely to express doubts about medical advice. Meyer et al

Therefore, context is critical when crafting an approach to the patient. Does the patient wish to be involved in decision making or would your presentation of multiple options with the relevant probabilities for each outcome make a bad situation worse? At a time when there is a push towards ‘patient self-management,’ the data suggests that some patients prefer a traditional approach with the doctor recommending a treatment modality. Older people in deprived areas top the list, the demographic that is at highest risk of chronic and complex health conditions. Unfortunately getting this wrong when the patient wants to be more involved may destroy the relationship between patient and clinician.

…he’s always explained—look whatever I’ve gone to see him for he’s explained, he’s gone into details. He, he doesn’t write anything off without doing tests for, for further examinations—whatever. And through the process of elimination as opposed to my previous GP who had the approach of, ‘ah it’s nothing—you’ll be alright’. Meyer et al

We need to understand the business of doctoring as an integral part of designing solutions aiming to optimise patient experience. We need doctors to step up as codesigners. Treatment is often determined locally within the appropriate context rather than a one-size-fits-all. The solution to healthcare challenges starts with having a good General Practitioner whose work is supported by good research in primary care.

Picture by Tony and Wayne

You can earn a living without making a difference

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I liked him instantly. There was something very refreshing about his willingness to be honest.

I hate my job. I’m 63 and I’m taking orders from men less than half my age. I had hoped that I could retire from my previous job but they privatised the company and a bunch of us were made redundant. So I took what was offered. So now I have to do all this physical work. On my breaks I eat chocolate. It helps me feel better and besides I like chocolate and milkshakes. I say to myself ‘ it has to be good for you its milk right’? Is Pizza OK doctor?

Several different colleagues had seen the patient over the years. He knew perfectly well that chocolate; milkshakes and pizza were a bad idea. A dietician and the practice nurse had seen him. His blood tests exhibited a worrying trend. Nothing that had happened in the intervening couple of years had changed. His job situation was much as it had been when he was first diagnosed with type 2 diabetes. He had been seen at least three times in the previous year and the picture was the same. If he had refused medication that decision was not recorded. I could imagine the conversation, focusing on diet and exercise. He described sleep apnoea and breathlessness on exertion. He struggled to get through each day. His cravings for comfort food and his sugar addiction were showing no signs of abating. For people like him we watch what plays out like a car crash in slow motion. Will he make it much beyond retirement? Will the vascular disease that appears in my crystal ball be averted?

A systematic review on the effectiveness of self-management training in type 2 diabetes concluded that

No studies demonstrated the effectiveness of self-management training on cardiovascular disease–related events or mortality; no economic analyses included indirect costs; few studies examined health-care utilization. Performance, selection, attrition, and detection bias were common in studies reviewed, and external generalizability was often limited. Norris and Narayan.

Our attempts to advise people like this man scarcely take account of their circumstances. Nowhere in his records did it tell me what this man did for a living, his hopes and dreams or his understanding of this unforgiving chronic condition. What was recorded was that he had received advice to lose weight (tick), to increase his exercise frequency (tick). His blood pressure had been measured at least three times in the past year (tick), lipids (tick), HbA1c (tick), renal function(tick), advised to see an optician(tick) and podiatrist (tick). According to our records he was receiving exemplary care. He was cast as ‘patient’ but not as a ‘person’. We knew nothing about where he lived, who lived with him, where he went on holiday, what he did at weekends, what he hoped to do when he retired. Nothing was noted about why he needs to do manual labour or whether he is in debt. In the fifteen minutes available this time we simply accepted that he was not going to change his lifestyle despite what I could tell him of the potential benefits. In return we shared a mutual concern for the risks he was harbouring. He would start medication and ramp up the doses until his risk for cardiovascular disease was reduced. Not a text book solution but then people are not cardboard cutouts. Our experience was supported by the results of research which reported that:

The core process of integrating lifestyle change in type 2 diabetes was multifaceted and complex. Challenges to the process of integrating lifestyle change included reconciling emotions, composing a structure, striving for satisfaction, exploring self and conflicts, discovering balance, and developing a new cadence to life. These challenges required acknowledgment in order for participants to progress toward integration. Whittemore et al.

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In healthcare better right than fast

365651675_f53581b7f6_zIt may be tempting to dream about being presented with a list of options, preferably as colour pictures. Standing in a very short queue or better still ordering by text and minutes later collecting the order (or have it delivered) complete with a discount coupon for the next visit. You’ve heard the words:

Have a nice day

This MO has been highly successful for selling things that we have now come to realise are harmful. The young lady at the fast food counter doesn’t have to care:

  • If you’ve been there before.
  • What you expect from the product (other than not to be poisoned any time in the next 24 hours).
  • If you can afford it (as long as you pay up today).
  • If you know and understand what you are about to eat.
  • Even if you enjoy the product as long as it complies with the description on the menu.

She is paid a wage and all she wants is to get through her shift and go home.

Joe (not his real name, nor any of the details below), whom I had never seen before, turned up one day and before he sat down starting fumbling through his wallet.

Won’t keep you long doctor. My own doctor is off sick, so I thought I’d pop in here.

He produced a business card from an alternative health practitioner. I noticed that he struggled to take the card out of his wallet.

I just need a letter of referral to this place

Apparently ‘this place’ won’t see patients without a ‘referral’ from a doctor. It could all have been over in less than five minutes. The letter might have said:

Thank you for seeing this man who has asked to be referred to your clinic.

It’s highly unlikely that anyone would have cared what it said as long as it was on a doctor’s letterhead. I could have collected my fee and moved to the next patient. But that’s not how I think it works. I coaxed Joe to sit down. He blinked in surprise. Was I really going to waste time when he just wanted a referral? Turns out he was a widower. He lived with his daughter. He moved to Australia 40 years ago. He was a motor mechanic until he retired and now in his late seventies he spent much of the day pottering in the garden.

That’s the problem doctor. I can’t do any weeding. My shoulders are killing me.

He described severe shoulder stiffness in the morning so much so that he occasionally asked his grandson to help him dress. The stiffness improved in the course of the day but his upper arms were still tender. He had lost weight recently but his own doctor didn’t seem too concerned. No headaches and his jaws didn’t hurt when he was eating. I couldn’t find anything wrong on examining him other than tender upper arm muscles. I had a hunch I knew what was wrong with Joe. I sent him for a blood test and arranged to see him the next day. If I was right I could fix this relatively quickly. Joe was nonplussed.

Thank you doctor. I really don’t know what’s wrong with me but my own doctor says it’s a trapped nerve and should get better. I’m in agony and the painkillers aren’t helping. But these guys at this clinic said they needed a letter before I could see them. So that’s what I was after. I will definitely come and see you again.

Joe was a frail old man, impeccably dressed with a politeness that is typical of his generation. He would have accepted anything and been grateful for it. Joe deserves the best and that doesn’t mean getting him in and out the door quickly with an insincere ‘have a nice day’. Why are colleagues encouraged to behave in this way? MacMedicine is not what the taxpayer ordered. Joe didn’t know what he needed other than pain relief. That’s not the same as being hungry and wanting a burger.

Picture by Brian Wallace

An object lesson in caring for people facing difficult decisions

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It was always going to be hard. The property market is super heated. Houses are selling at record prices, sometimes several hundred thousand dollars above the reserve. Coming from overseas and with no experience of auctions, our friends struggled to make any head way purchasing a home. They attended several auctions and soon realised that the first to blink leaves empty handed. Alpha males turn up determined to be the one holding the keys at the end of the day, emboldened by low interest rates.

They urgently needed support from a buyers agent. In the week before the auction the team took them step wise through the process urging them to focus on their choices and then sleep on any decision. They had one member of the team as their designated point of reference. The team included excellent communicators. Listening, reflecting and clarifying before summarising what they thought was being said. The inspections of the property were detailed and accompanied by photographs of every fault no matter how trivial. Comparisons with similar properties and their sale price were presented.

Our friends were urged to focus on the decision to buy and not to become distracted by technical aspects that required professional skills nor speculating on who might be competing for the property. They felt secure that the team would advise them if they were about to offer more than the market might be prepared to bid on auction day. At the same time they were given no guarantees and there was always an element of risk. A pre-auction bid was delivered within 24hours of the auction accompanied by a cheque as a full deposit on the property. The strategy was successful. The team sent them a huge bouquet of flowers and hand written card featuring a picture of their new home. Subsequently a series of messages on what the team had learned about the possible competition they might have faced at auction.

How often in healthcare do people face difficult choices- defined as choices that may result in unfortunate consequences? Elsewhere in the world a member of our family had a very different experience awaiting a hip replacement constantly worrying about issues over which he has no control such as appointments that he is powerless to organise. Rarely if ever feeling that he can focus on the decision to have the operation more than the technical aspects of how and why a hospital schedules surgery. During an illness doctors can do for patients all that a buyers’ agent might do for their clients. Perhaps that should be a quality indicator for those in healthcare where life and limb are at stake not ownership of bricks and mortar.

Picture by Picture by Neil Moralee

How you might stumble during a marathon medical career

299398986_994a9e9feb_zMedicine is an art. Sure there is science involved but in essence it is an art because science alone does not guarantee good outcomes in healthcare. If you fail to communicate with the patient, no amount of science is going to make a difference if the patient does not choose to act on your advice. That means the neither doctor nor patient can be removed from the outcomes equation. The needs and wants of the physician have as much of a bearing on the outcome as anything else in the mix. How we feel as health practitioners, how we are perceived, our biases and shortcomings are worthy of close attention and may be a great place to focus efforts to innovate in healthcare. Here are ten videos, reports or papers that identify the pitfalls.

Workloads can make it difficult for some doctors to perform optimally.

We may not be communicating effectively.

4 out of 5 doctors don’t get enough exercise.

Nearly 60 per cent of doctors may be overweight or obese.

Some doctors might lose empathy in the course of their training.

Burnout is a real risk in medicine.

While obesity may be increasing some doctors can harbour prejudice.

Dangerous drugs may be over prescribed .

The evidence doctors adopt in a specific case may be flawed.

Some doctors don’t explain risk well

Picture by Giulio Volo

Turning up can be the most effective innovation

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What do the following having in common?

  • The doctor you remember fondly
  • The best teacher who ever taught you
  • The professional who helped you when you were feeling vulnerable

They showed up from the moment you needed them. ‘Elegant Andrew’ was our first obstetrician’s nick name. He was also my boss.  He was called ‘Elegant’ because he was always formally dressed, even in the middle of the night when he was hauled out to get a baby out of trouble. He organised a scan, almost as soon as he knew we were going to be parents so that we could say  ‘There beats the heart of a Jiwa’.  He was excited for us. He did not have to be there for the delivery because he trusted the midwives on his team and they were clearly at ease with him. But we knew that Andrew could get a baby out within 20 minutes of being called if there was a problem. I saw him do that for a woman who bled unexpectedly during labor.  He was there minutes after we entered the labor ward and then again as soon as our baby was born. We have the pictures to prove it. His smiling face beaming down at the newborn in his arms as if he were family.

We also remember the solicitor who facilitated the purchase of our first home. We were new to Scotland and were hardly familiar with the laws around buying and selling property. From the moment we entered his rooms we felt a sense of calm even though we knew that one of his juniors was handling the actual transaction. He walked us through the process, connected us with his team and telephoned in person to tell us we were homeowners as soon as it was official. We sought his help again until we moved out of the country and he informed us with great regret that he could not help us in another jurisdiction.

The point is that these individuals built the relationship with their clients before there was a problem. They showed up. They engendered a sense of personal involvement and excitement or concern and whether it was good news or bad they would be there in person. Some things can’t be delegated. Establishing and maintaining a relationship with your clients or patients is one of these. The enormous social capital that can be banked simply by being there at the key touch points in the relationship is crucial. It doesn’t mean that you have to do everything that is required in a complex case where team work is necessary. However there are critical points in the journey where you have to show up. The outcome, good or bad will be recalled in the light of your first encounter with people. There are many factors that impact on outcomes for people who seek professional advice. There is much that can assist to improve the outcomes; technology, drugs, procedures and luck. However one key factor remains through all such events in our lives, the human factor. People have an innate desire for human contact when they are feeling challenged. Be there if that is the nature of  your business.

Friendships born on the field of athletic strife are the real gold of competition. Awards become corroded, friends gather no dust. Jesse Owens

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The case for innovation up close and personal

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In the same week that my colleague drew my attention to the new book ‘ The patient will see you now‘, I became part of John’s story. I quote from the book:

Doctors are still labeling patients as difficult. Patients are typically unable to see, let alone keep or contribute to their office visit notes about their condition and their body that they paid for, Frequently they have to consult multiple doctors for the same condition. It may take weeks to get an appointment. The time with the doctor is quite limited, typically less than ten minutes, and much of that is without eye contact because the doctor is pecking away at a keyboard.

John (75) was born and lives in Dublin. He has the generosity of spirit that made Ireland what it is. A working man all of his life he lives to walk to the shops on Saturday morning. Two years ago he had a bilateral knee replacement. In the past six months he has become severely disabled with back and hip pain. He now walks with crutches and spends most of the day in a chair. His aging wife has to help him put on his socks, a friend ferries them to the shops in his taxi once a week. He is in constant and relentless pain. He attends a pain clinic and visits his general practitioner on foot, a hour long walk on his crutches every week. His aging prostate requires him to be within a short dash of a toilet. He finds life a struggle each and every day. He needs a hip replacement.

He was offered a review appointment at a Dublin teaching hospital. The appointment last Thursday was for 2.30pm. Not wanting to keep the doctor waiting he turned up on time and patiently waited in a chair until 6pm when he was finally called in. The senior house officer who saw him was ‘multitasking’, fielding calls from the wards. The patient’s records were strewn on the floor at his feet.

After a cursory examination he advised John that he would have to be ‘worse’ before they could do anything. John politely thanked him for his concern but asked to see the consultant. The consultant offered to refer him to a pain clinic but added that it would take months to get an appointment. John pointed out that, as their records would show, he was already attending a pain clinic and the specialist there told him nothing more could be done and that he needed a new hip. The consultant was unfazed by this news and said he would ‘write to the pain clinic’. They watched him struggle out of the chair and leave the room.

Not one to make a fuss, ever, John took a taxi home. By the time he got home he needed to ‘go straight to bed.

John’s story is typical of the many Irish people who daily endure a third world healthcare system. Ireland’s tax payers, men and women like John forked out for the training of tens of  thousands of doctors who form the backbone of healthcare organisations the world over. But John gave me more. He is grandfather in our family. It pains us deeply to hear that healthcare in that country is now for those with private insurance or those who are prepared to voice their displeasure. Surely it can’t be beyond the pale to organise an outpatient clinic where people are treated with dignity even if, it seems, nothing can be done for them? How do specialists determine who merits the rationed healthcare resources now on offer? John was advised to be very polite to secretaries who have power and influence over their boss’s schedules . The need for reform is compelling. It may not be obvious in ‘official’ data because the whole unpalatable truth is only apparent to those who have not. It doesn’t require research to know that something is very wrong, it simply requires an interest in the experience of those who need healthcare the most.

Picture by Julie Keryesz

Care is not delivered in a vacuum

3798267293_030d8688bd_zGeneral practitioners (GPs) are the most used health service providers in Australia. In 2010–11, an estimated 14.5 million people aged 15 years and over (82%) had seen a GP at least once in the previous year, with 11.8 million seeing a GP more than once.  At that time in 2011 that there were 43,400 general practitioners in Australia, 43% were women and they worked an average of 42 hours. An earlier census reported that the average age of a GP was 49.3 years with almost one in three older than 55 years. Yet studies seldom report the impact of this demography on the professional advice offered in practice. If it is relevant to tailor health care advice to the ideas and expectation of the patient or client than by corollary it is relevant to consider the personal experiences of the healthcare professional who offers a service. We know for example that lectures, guidelines and protocols aimed at doctors may have less influence on whether a patient receives evidence based care than staff room conversations, peer pressure, the views of opinion leaders or the impact of personal experience within an individuals circle of influence. In research on innovations delivered in the consultation, the clinician is a significant confounding variable. A fact that is rarely mentioned in the limitations of the study.

Primary care clinicians work in “communities of practice,” combining information from a wide range of sources into “mindlines” (internalised, collectively reinforced tacit guidelines), which they use to inform their practice. Gabbay and le May.

Consider for example a recent report that the diagnosis and treatment of malaria by doctors was derailed by the influences described above. What is also recognised is that when doctors become sick or treat their own families they don’t necessarily follow clinical guidelines. What then might make it more likely that doctors provide evidence based care for chronic and complex conditions? With one in three doctors over the age of 55 it is likely that many general practitioners, their partners, families and friends will experience the onset of chronic illness- diabetes, low back pain, depression, cancer etc. They are also going to be invited for screening- colorectal and breast cancer. Their attitudes and experiences may well predict how their patients will be treated. For example in a study in which doctors were asked their views on screening their patients for alcohol abuse, the authors, Anders Beich and colleagues did not report on the alcohol consumption of the participating doctors or their experience of alcoholism in their close family or friends. One participating practitioner was quoted as having said:

To me, just asking everybody about their drinking habits is in part comparable to if I had to do a rectal examination on all patients that came to see me.

Therefore the doctor is a key stakeholder in the process of health care not just by virtue of a professional role but also with respect to his or her personal history and prejudices. This has implications for diagnosis but also for treatment. Patients need to be seen and heard. When the doctors senses are impaired by personal history it is possible that their assessment of needs,  symptom severity or risk may be limited.  What may help innovators is empirical evidence that addressing this question in a defined setting may help deliver better outcomes for patients.

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