Cast & Curious

Tag: Patient First

  • Are patient “proxy measures” helpful in assessing the quality of care rendered by a healthcare professional?

    A patient consulted me years ago for a draining sinus in his right leg. He previously underwent several surgeries in the leg for multiple open fractures in the lower extremities sustained from a motorcycle crash. The fractures got infected despite repeated surgeries. After almost 6 months of treatment, clinical and laboratory findings suggest the infection is “controlled’ and the draining sinus is healing. The surgeon applied a closed circular leg cast on his right lower extremity.

    “I asked the doctor if he can place a cast window over the wound” said the patient. The doctor replied “there’s no need for that”. “Your wounds are healed and I’m placing cast so your leg bones will unite”.

    Two weeks after, the cast emitted a foul smelling odor. His right leg is still on circular’ long leg cast when he came to our clinic. The foot part of that cast is nowhere to be found and the patient is “walking” with crutches on his affected leg.  After opening the cast, a draining sinus is again right where the wound is supposed to be “healed”.  The worst part of this experience according to the patient is not that he had another draining sinus heralding an infection,  but this.

    “We asked the surgeon to place a cast window over the wound, but he didn’t listen. The odor is unbearable, I couldn’t clean it. Everybody avoided me because I smell very bad.

    The phrase “he didn’t listen” stuck even now that I am in my private orthopedic practice. It served as a constant reminder for me of how I will ultimately  gauge the quality of care I deliver as a physician. This may arguably be, a very controversial mantra of service for a healthcare professional. Personally though,  I’m reminding myself why I am in the business of medicine and who I’m supposed to be “servicing” first . Patients. They are exactly why I wanted to be a doctor in the first place.

    A very interesting offshoot of this patient encounter was the fact that he wasn’t really concerned of another infection. It is the fact that the doctor “didn’t listen to him”.

    Scientific evidence and Peer reviews

    Quality of care for physicians is measured by how well we render service using available scientific evidence and peer reviews by colleagues.  No matter how we try to convey these scientific evidence into understandable bits of information, patients seem to have a “different” criteria of measuring the quality of care we render to them.

    In the example I mentioned above, the patient measured the “quality” of care rendered not by how “scientific” his chronic leg infection was managed, but by how the doctor “listened” to his suggestion.

    No matter how physicians strive to be objective, patients will always take their “health experience” as personal. The context of this health experience is a manifestation of their personality, values and expectations. Thus patient measures health care effectiveness by making comparisons of what physicians do against what they understand, of what they “experience”. In short, patients uses proxy measures- a reasonable default because often, the complexity of medical science baffles even the best of its practitioners.

    What is a Proxy Measure? A proxy is an indirect measure of the desired outcome which is itself strongly correlated to that outcome. It is commonly used when direct measures of the outcome are unobservable and/or unavailable. An organization should use a proxy measure when there is little or no data available about the program being implemented, but the outcome the program is designed to influence has an existing and commonly accepted proxy.

    A lady patient once whispered to me asking my team to leave the room for a moment and come back after 5 minutes. “I just had my bedside bath and I’m still in my underwear when your service entered my hospital room”. She said he would appreciate it next time if the station nurses warned us before going inside the room.  Respect for the patient’s privacy as an individual or a person rather than just as a disease or medical condition is another proxy measure most patients used to gauge us physicians.

    A third proxy measure that is of interest to me too is how well coordinated is my whole medical service team. A patient once asked a nurse who was dressing her wounds why she and not the surgeon is cleaning her wound bedside, the nurse replied “I’m did because I was ordered to”. When patients sees the healthcare team in disarray or is uninformed about his or her treatment plan, it reflects bad on the whole healthcare team.

    These are just some of the proxy measures that patients use that I personally had experience.  Some physicians would argue for or against the validity of these proxy measures. Personally though, many patients do not really care what “99.99% of patients with this medical condition get well” meant for their own illnesses. Their health experience matters most. If this is true and valid, why are proxy measures not included in the physicians criteria for assessing the quality of care we deliver?

    Join us this Saturday, August 13, 2016 9PM Manila time as we discuss the importance patient proxy measures in assessing the delivery of care by health professionals

    • T1. Are patient “proxy measures” valid measures for quality of health care? Why or why not?
    • T2. What are your top three patient proxy measures of care and how do you validate (investigate) these measures as a physician?
    • T3. Is it helpful if we incorporate “patient proxy measures” into our system of assessing  quality of service? Why or Why not?

    Again, see you this Saturday 9PM for another lively, interesting tweet chat by using the #healthxph.

    Resources:

    1. Gitbooks  https://centerforgov.gitbooks.io/benchmarking/content/Proxy.html
    2. Patient Safety Quality Improvement, Department of Family and Community Medicine, Duke University School of Medicine http://patientsafetyed.duhs.duke.edu/module_a/measurement/proxy_measures.html

  • Illness Narrative and the psychology behind patient stories online

    (This post was written by Dr. Steph Miaco a clinical psychiatrist from UP-PGH practicing in Dumaguete. I’m crossposting it here, from healthxph.net with her permission)

    What is an illness narrative?

    According to a common reference (Blackwell), It is mostly thought of as ill person’s narrative about their illnesses and the effect on their lives. Illness narratives can also include the narratives of relatives about the effects the illnesses have had on their relationships with the sick people and their own lives. They often occur as oral narratives in everyday conversations with family, friends and colleagues. They may also appear as written or published biographical or autobiographical accounts of illnesses and pathographies.

    They can be seen as written and published accounts of illness, in published biographical and autobiographical formats. These forms help articulate experiences and events that change one’s life and its prerequisites as a result of the illness. With the advent of social media and increased print capacities, it is becoming ever more easier to have one’s story for consumption in to a wider audience.

    The medical sociologist, Arthur Frank suggests that ill persons of modern times are more interested in wanting their own sufferings to be recognized as an individual experience. However, this narrative places the individual’s suffering to be placed in an everyday context, quite unlike the medical narratives which reflect the needs of the medical professions.

    Illness narratives can exist in many forms, including that of print media, Television, and cinema, however, for the purposes of this #healthxPh discussion, we will limit our discussion to sharing of narratives through social media, an equally daunting avenue.

    Illness stories have attracted attention in health care research, as it is an avenue where health care workers and caregivers of patients can “look through the world through the patient’s eyes”. It is an extended view for understanding what the patient’s experiences and struggles are, as well as their finding solutions for their common problems.

    Research on the illness narrative has only started in the 1990’s, but is slowly progressing. It’s potential as a major source of information as to how patients process their illness journey and respond correspondingly to their illness, is only starting to be tapped. To illustrate, I would like to bring to light one study on the narrative typologies of patients with neuroendocrine tumors done in Italy (Miconi, et al, 2015). The study used narrative information from 21 letters of patients with Neuroendocrine tumors , whose specific symptoms varied related to disease pathophysiologies and individual characters. On a daily basis, they would be coping with the symptoms of fatigue, flushing, diarrhea, food intolerance restlessness, dyspnea, fluctuations in mood and pain.

    Currently, the treatment options are surgery and palliativecare however, despite the fact there there is no cure, the majority of these patients live for many years with more or less problems with the symptoms as well as the side-effects of the medications. This is a rare disease which proved to be a challenge for the patients and the hospital staff.

    For the study, they drew upon a book project of 21 letters of patients in different stages of NETs, which aimed to share information about the experiences of the patients and their relatives and how it was to live with this rare illness. The book was grounded on the premise of narrative medicine, and aimed to build empathy (and thus increase understanding) between the physician and the patient, as well as form communities to combat loneliness and isolation.

    Frank’s typology was used in the analysis of these narratives, to make sense of the patient’s understanding and making sense of the events in their lives. He presented three different forms that these illness narratives can take, and these are the following:

    1. The restitution narratives show that someone is sick and gets treated, and then gets restored. In these stories, the patient is almost a passive character, who relies on the doctors to get well.
    2. The chaos narratives are more focused on the characteristic that life never gets better and that the “sufferers” are stuck in a neverending complex situation which blocks movement into a more meaningful response to the illness. The patients tend to feel out of control, and because they are plagued by chaotic perceptions, these stories have no structure.
    3. The third type, quest narratives,which come in three types (memoirs, manifestos and automythology), are the more positive types. They convey that the patient with the illness is moving forward. These are narratives where there is some active acceptance of their illness and prognosis, and that they have undergone a personal change, which offered up insight into alternative ways to deal with the illness.

    In the study, the patients described various ways of fighting with difficult cancer. of the patients studied, there were two who were close to giving up, and they believed that their illness was a sacrifice which filled them with bitterness because of a believed “stolen future”. They believed that it was hard for them to accept the inconveniences of their illness. One female in the study talked about how her hardest burden was keeping it all inside and having anyone to share her suffering to.

    These stories were greatly varied, and their experiences with the illness could not be measured with the usual QOL instruments. However, these narrative examples mirror data from cancer patient’s storytelling in general; that they experience a danger for their future life, that they were fighting a difficult war, and that it was an opportunity for personal growth, which needed to be shared by others.

    The study merely added examples and further knowledge to Frank’s narrative typology of how patients handled their cancer experience. This holds interest for us clinicians because it gives us an understanding of how a patient’s experience with their illness might be a critical factor in their lives as long-term patients. Their coping mechanisms are varied, and they will most likely find way to cope with illness.

    The study concluded with how they highlighted stories focusing on the patient’s imbalance and chaos during the illness experience because they illuminated the patient’s concrete suffering, which provided the clinician about their emotional, physical and spiritual state. Listening carefully to a patient’s story might be a starting point for them to find their own resources to attain balance. Furthermore, learning from quest stories, it seems possible to move forward to acceptance and to develop a model for a way of living with cancer. Nevertheless, they claimed that they were skeptical about an uncritical use of quest narratives as a model for clinical practice because they might contribute to individualistic and heroic prescriptions for life that other patients might find impossible to achieve. They recommended that they needed to do additional research on how to use the narratives to support the patient.

    —

    The study was limited to the patient’s letters, and might have not given as much depth (or amount of data) as an interview study. The letters however, give us a better view of the patient’s character and story in that setting, but do not necessarily apply to the general population, as differences in culture and personalities abound.

    However, as a way of seeing possible ways to approach the problems clinically, and correspondingly, to give patients a deeper insight about their struggles, the illness narrative’s importance is paramount. Giving a “face” to a person’s suffering helps us think of new approaches, and thus, possibly more effective methods of care. However, from our experience with patients, a number of questions have come to light.

    • T1 How and why do patients write their illness narratives
    • T2 How do healthcare professionals react to illness narratives in media?
    • T3 Do illness narratives affect are and policies? How can we advise patients about this?

    Looking forward to yet another productive interaction on tonight’s #HealthxPh chat! Join us tonight Saturday, April 1 2016,  at 9PM Manila time for another very interesting chat

  • Flying with an angel

    “Rest in peace Samantha. I will always remember you.”

    3A. Window side. That was supposed to be my seat on the plane. Seeing a dad comforting a special kid on his lap on seat 3b and 3C (near aisle), I volunteered to sit on the 3c so that the kid will not be bothered by aisle passers by. Her dad started a pleasant conversation with me – our common medical background (he is a retired med tech), his wife ( originally from my place and was a classmate of my elder sister ) to Samantha’s condition.

    Samantha has demyelinating disease and cardiomyopathy diagnosed 11 years ago. With muscular dystrophy and muscle wasting, Samantha couldn’t control her head and is dependent on her parents and siblings for her basic needs. She’s been on and off medical complications that her parents had a “mini ICU” in her room. The day prior this flight, Samantha had difficulty breathing, prompting her dad to cut short their visit and boarded the earliest flight back home to Davao. Samantha’s family and her “life support” including her doctor is in Davao. Samantha’s dad knew the risk of flying Samantha in that state given they were in the same predicament several times before. The family also knew and has accepted Samantha’s fate even before, despite the numerous exhaustive struggle to fight the poor prognosis of children affected by this rare disease. It’s only a matter of time.

    That time was a little about over 30 minutes after I sat beside her. She was initially responsive to her dad’s assurances, nodding and giving out quaint sounds while her dad hand comb her hair. Later I noted Samantha’s quick but labored breathing. I checked her extremities, it is cold and cyanosis was setting in. This went on for some 20 minutes then she gasped for one big breath, never closing her eyes, staring on us both, quietly and without noise, then she stopped breathing.

    After quickly introducing myself as a physician, I asked the stewardess for the plane’s on board medical oxygen. I immediately hooked Samantha to oxygen via facemask.Samantha wasn’t breathing. I auscultated her chest and checked her pupils. No heart rate. Fixed, dilated pupils. Her eyes was still open as if staring on me. “No heroics doc” her dad told me. “Let’s not prolong Samantha’s agony.” I continued giving medical oxygen and asked for an ambulance on the ground ready anyway. Just in case. Or maybe.

    9:56 AM on board flight 5J348.

    I will not forget this day. I have seen dying people and have tried reviving most. Some lived, others died. I held Samantha hands tightly until we transferred her to a stretcher then to an ambulance. Just in case… Rest in peace, angel. Thank you for choosing me to watch over you on your last moments. Be our angel. Rest now.

    (My condolences to the bereaved family. To Samantha’s mom, thank you also for allowing me to post this publicly )

  • Improving Quality of Care with Quality Time in the Clinics

    Two weeks ago, a patient walked into a clinic and asked if he can be accommodated for a consultation. It was for a non emergent complaint but the patient lives in a far flung community that a “reschedule” would be costly for him.  There was already a line up of patients scheduled for consults and follow up that afternoon. Some of these patients are also scheduled for a procedure after the clinic hours. Based on this doctor’s regular outpatient clinic load, his staff estimated they might be extending clinic hours that afternoon.

    Since the physician have scheduled procedures that afternoon and was already seeing patients beyond estimated “quality time”, what do you think should doctor do without jeopardizing the quality of care rendered in his outpatient clinic? Will he see this patient and shorten up the time intended for the other patients or just extend his clinic hours thereby extending also the waiting time for patients who are decked for procedures?

    Share your thoughts as we again “crowdsource” feedback of physicians and patients on “Improving Quality of Care with Quality time at the Clinics”  in our tweetchat and HOA tomorrow 10 AM Manila Time (UTC + 8) April 27, 2014 here at #HealthXPh

    [su_box title=”QUESTIONS”]

    • T1 What factors determine optimal patient consultation time?
    • T2 How can patient waiting times at clinic be reduced?
    • T3 How can time at the clinic waiting room be better spent? CT: As a patient, what do you think should this doctor do? As a physician, what will you if you are in his position?Why? [/su_box]

    Suggested Readings:

    Time and the Patient–Physician Relationship
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1496869/

    Healthcare Clinics in the Philippines
    http://www.philippinesplus.com/2012/12/04/healthcare-clinics-in-the-philippines/

  • What should a dissatisfied patient do regarding their physician’s “bad” service

    Recently, I’ve been receiving   complaints from patients regarding some attending physician’s “quality” of service. Complaints like, “the doc saw me late already” or “my waiting time is far longer than my physician encounter time”  or “this was not explained to me” or  the difficulty of some patients (or relatives) to talk to their physicians. In most cases, the attending physician’s technical competence is unquestionable, but the patients or relatives sometimes felt they still didn’t receive adequate care or service from their physicians. What must they do?

    a patient unhappy with the physician services rendered to him (Photo credits from http://www.art-of-patient-care.com/doctor-patient.html)

    I always tell these “complainants’ that any doctor-patient relationship is contractual by nature. Meaning both parties has to agree and deliver their end of the deal to consummate the “contract”. The contract is of course the delivery of health services required by the patient’s current health needs.(Read my perspective of this here.) This may sound simplistic but for purposes of discussion, this “understanding” of a contract should suffice. If one party, does not agree or adhere to the contract, then the relationship could be terminated after due process.

    In non- emergent situation,  and if the service is available, patients have the choice on who will be their doctor or what type of service they could avail. That by choosing or agreeing to be under the service of a particular physician, the patient also has the responsibility of paying the services of that physician. That is the contract, no matter how business like it sounds.   In cases where one party felt that other party did not deliver the expected service , he or she may choose to end the contract after duly informing and after paying the services rendered by the physician. (By the way, the physician under certain circumstances and on valid grounds, may opt to terminate a patient-physician relationship too but let’s leave that discussion in my future posts.)  In my practice, I always offer this option to all my patients even prior to our patient-physician relationship.

    Problem comes in when patients just change physician services without adequately informing their previous and frequently, their succeeding physicians. Far worse is the situation  wherein patients  “leave” their previous physicians without paying their bills on the pretext of a “bad” service.  This is not good practice either and probably will only harm patient’s reputation also.  In the first place and except in emergency situations or some government health training facilities,  the choice of  any physician is really the patient’s responsibility. Health is the business not just of the physicians and institutions but of the patients as well. If you don’t know any of your physicians in the community, then you cannot blame someone else for receiving a bad service. Remember, that physician  gave his or her professional service and in the context of a contractual form of relationship, that has to be duly paid even if you’ll change physicians.

    Patient doctor relationship is based on trust (photo from http://harvardmedicine.hms.harvard.edu/doctoring/patient-doctor/index.php)

    So if you want to change your attending physicians for a valid reason, inform your physician of the transfer. Pay your end of the  contract, meaning the services rendered. Cultivate the habit on talking to your doctors. Pour in your concerns on them and seek necessary answers to lingering questions.   But don’t forget to inform the physician if there’s something good also about his or her service that you liked. I always believe no doctor would want any patient to feel bad about their brand of service. Just be honest. If those physicians do not change for whatever reason, that’s their catch. Remember that health community is far more sensitive than we thought on issues like this. These type of service screw ups always catches up someone else ears. If you don’t like them, then do not patronize them. That way, you won’t complain at the end of your contract. That simple.

    Or is it? What do you think?

    “The essential quality of the clinician is an interest
    in humanity, for the secret of the care of the patient is in caring
    for the patient.”    – Francis Peabody Class of 1907, Harvard Medicine