Category Archives: Patients

Difficult conversations

Communication, Generic, Patients

From “Everything happens for a reason – and other lies I’ve loved” by Kate Bowler:

Appendix 1 – absolutely never say this [my comments added]

  • Well, at least… [minimizing]
  • In my long life, I’ve learned… [good for you, have a medal]
  • It’s going to get better, I promise. [fantasy]
  • God needed an angel [only if you watch Ghost, and you think God is sadistic]
  • Everything happens for a reason. [let’s see if you appreciate my theories when you are drowning]
  • I’ve done some research [have you heard about… Forget what the professionals say, there’s bound to be a secret cure out there]
  • When my aunt had cancer [living it, thanks, would rather not have to relive someone else’s – particularly if this my opportunity to NOT think about it]
  • So how are the treatments going? [not nice to have to summarise it and regurgitate it constantly, please check first if I want to talk about it today, sometimes I do, sometimes I don’t]

Appendix 2 – give this a go

  • I’d love to bring you a meal this week [bring me anything, I don’t really know what I need, what are you good at?]
  • You are a beautiful person [nice to know you are doing a good job – without this being some sort of lesson.  And don’t make it sound like a eulogy]
  • I’m so grateful to hear about how you’re doing, and just know that I’m on your team [nice to not have to give you an update, great that you’re informed and concerned, let’s talk about something else]
  • Can I give you a hug?
  • Oh, my friend, that sounds so hard [sometimes it feels like no one wants to hear about how awful it is – simmer down, let them talk]
  • (silence) [the truth is no one knows what to say – pain, tragedy are awkward.  So show up and shut up)

Sometimes our role is just to sit in the rubble with families (Judith Murray).

See Spiritual Care.

Family centred ward rounds

Communication, Generic, Patients

A study highlighted that the attending physicians talk outside the room as much as or more than they do inside the room.

“It is frustrating to hear the team speaking about you in the hallway before they come in and wondering what they are saying. Then, after they leave the room, they continue to have discussions in the hallway, where we can hear pieces and parts but not all of the discussion.

“We would prefer that all discussion happen in the room with the nurses and the family present.”

The nurses are the ones who have spent the most time with the family, and they have a lot of information to offer. However, the study highlighted that the nurse does not have much of an opportunity to speak during the rounds.

Sometimes, the entire rounds process is effectively over by the time the medical team comes into the room, and rounds are more of a procedural event than a discussion.

Other comments from one family:

  • It would be nice if all physicians involved in the care could participate in the family-centered rounds experience, even if some need to be on the phone. Many times, the rounding process happens but then we are left with a statement that they will wait until the other doctors come by to make a decision. This not only prolongs the decisions but also splinters the care that the concept of family-centered rounds is trying to improve.
  • We appreciate when the medical teams sit down in the room with us. It makes us feel as if we are having a discussion where everyone is invited to participate instead of a group of people standing over us. This style of communication seems to engage the patient and family in honest, open conversation, and it seems to cause the team to slow down enough to listen to our story.
  • It would be nice to have some idea of when they are coming to the room because it seems that no matter what we do, the team comes in when one of us has run to the cafeteria to get breakfast or to take a phone call in the lobby.

[Sarah Pickel, Mark W. Shen, Collin Hovinga.  Hospital Pediatrics  Jul 2016,  6  (7)  387-393;  DOI: 10.1542/hpeds.2015-0136]

Webcam clinics

Patients,

Webcam clinics for diabetes (Newham, all ages) – mean duration only 9 minutes for both consultants and nurses, cf 25/30 minutes for face to face!  DNA rate 13% cf 28% for face to face.

Patients felt HCPs more focussed on them, other studies have confirmed that eye contact is better! But feels more impersonal, so prior relationship is important.

Health anxiety

General paediatrics, Medical, Patients, Psychology

DSM-5 has “illness anxiety disorder”, defined as preoccupation with the idea that you’re seriously ill, based on normal body sensations (such as a noisy stomach) or minor symptoms (such as a minor rash), to the degree that it gets in the way of normal life. Other features are persistence of such ideas over 6 months, finding little or no reassurance from negative test results or a doctor’s reassurance, repeatedly checking body, avoiding people, places or activities for fear of health risks.

In other words, hypochondriasis. Which gets its name from the idea that such feelings came from liver/spleen/gall bladder (“melancholy” – black bile).  William Cullen, in Edinburgh in the 1790s, appeared to take a particular interest in this.

For the sake of diagnosis, this disorder requires the absence of symptoms, which excludes the large group of people who have similar preoccupation and fears about non-specific or unexplained signs and symptoms.

Health anxiety is therefore a broader concept, and can include anyone who is more desperate for relief from worry, than for relief from actual symptoms.

Cyberchondria = combination of increased pathologisation of society, and ability to browse the internet.  Because provides the opportunity to find very serious, extremely unlikely explanation for problems.

Diagnosis of health anxiety is well accepted by patients if explained respectfully!

[BMJ 2016;353:i2250]

Individual responsibility for health

Ethics, Generic, Patients

Deciding how to distribute health care costs may include looking backwards at what behaviours have contributed to a condition (eg tattoo removal may not be publicly funded, but removal of a disfiguring skin lesion where suffering is equivalent is), or may look forward to how behaviour might affect the effectiveness of a treatment (eg liver transplant with continued alcohol excess).  Sometimes looking forward and looking backwards have the same outcome, but not necessarily.

There are a number of arguments against these attitudes:

  • Humanitarian – a patient’s suffering should be addressed, regardless of the circumstances
  • Libertarian – denying treatment is likely to lead to even worse consequences, with eventual loss of political and civic participation (which is a societal good, as per JS Mill)
  • Fairness – although certain behaviour may increase the risk of a negative health outcome, other factors also play a role which are outside individual control, and rarely straightforward to establish causality.
  • Practical – if a doctor makes decisions based on behaviour, it encourages intrusiveness on their part, and defensiveness on the patient’s part, both impact on doctor-patient relationship
  • Moralistic – who decides which behaviours are acceptable and which not? Rarely non-judgmental

The liberal egalitarian response is to hold individuals responsible for their choice, but not for the consequences of their choice.  The egalitarian view is that everyone should have equal opportunities, regardles of their natural or social advantages/disadvantages at birth.  Of course, it can often be debated whether “choice” is ever truly distinct and independent of circumstance!  The liberal view is that there should be no formal or informal barriers (although not necessarily compensation for the disadvantaged).

So it would be appropriate to tax smokers an amount related to the increased health costs of smoking.  It would not be fair to tax some smokers more than others, even if the costs of their treatment might be more – it is the choice that matters.  This avoids all the objections above, apart from the moralistic one: but at least decisions on lifestyle taxes are made democratically, not by health care providers.

Does not solve the problem of whether behaviours can truly be considered a choice, when they are often predictable based on socio-economic factors.  Plus, not all types of behaviour can be taxed – physical inactivity?  Poor health care seeking behaviour?  Unsafe sex?

Cappelen and Norheim, J Med Ethics 2005;31:476–480. doi: 10.1136/jme.2004.010421

Significant Event Analysis

Clinical governance, Generic, Patients

Traditional M&M (mortality and morbidity) meetings – Many errors are not reviewed, and the key protagonists often not present when a case is being discussed; fail to engage affected families. This lack of transparency in the context of the Francis report is at odds with our duty of candour to patients when things go wrong.

Much energy is spent in the NHS concluding whether errors, adverse incidents and deaths are ‘avoidable’ or ‘preventable’.

‘Avoidability’ is an arbitrary conclusion – what matters, surely, is the care that the child received. Professional analysis of the care given reassures parents that their child’s life is of primary importance, and may provide some comfort that their experience will benefit other children.

Root cause analysis (RCA) tracks the origins of an adverse event back to find causes – too simplistic?

cf ‘Safety-II’ approach – focuses on understanding how things usually go right, and only then exploring why things occasionally go wrong.  Rare serious events, although easy to identify, often have complex aetiology, and factors may be difficult to modify. In contrast, “normal” behaviour may be easier to understand and to influence.

Parents’ own questions should inform professional discussion.  Analysis should go beyond identifying what the child died from, to considering why a child died of that condition, in that place,  at that time.

“The investigation of medical error, adverse events and child mortality each requires a distinct approach that revolves around a continuous cycle of reporting, professional scrutiny and follow-through of SMART actions. These processes should separately feed into a properly formatted clinical governance meeting, the purpose of which is to provide assurance to hospital boards and other regulatory bodies that there exists coordinated oversight of risk management, clinical effectiveness, audit and patient experience.”

[James Fraser, Bristol – Arch Dis Child doi:10.1136/archdischild-2015-309536 ]

Overdiagnosis

Generic, Health Literacy, Patients

Online survey of 400 people aged 50-70, only 2.6% of people could explain what overdiagnosis means.

Definition: when a disease is detected that would not cause any harm during the lifetime of the patient.

Without better public understanding, difficult for them to make informed decisions about their health.

Ghanouni et al. A survey of public definitions of the term ‘overdiagnosis’ in the United Kingdom. BMJ Open 7 April 2016.

E-patients

Generic, Patients,

See also Expert patients. E-patients – (Wikipedia) use internet on behalf of themselves or others to get information about medical  conditions.  Tom Ferguson white paper.

  1. E-patients are valuable healthcare resources, and should be recognized as such.
  2. Empowerment is trickier than you might think.  Knowledge may increase but improvements in anxiety, self efficacy, changes in behaviour do not always follow. Patients often know more than doctors realize, they often want to know about things doctors don’t have the answers to (or would avoid answering), and they often want to pass things on to other patients or give feedback to their doctors [Diana Forsythe, medical anthropologist].
  3. Patients can quickly know more about a condition than their doctor.
  4. Hazards of imperfect online health information prob exaggerated. Cf medical errors!
  5. Wherever possible, healthcare should be provided on patient’s “turf”
  6. Clinicians can no longer go it alone
  7. The most effective way of improving health care is collaboratively

In the outside world, a diagnosis (esp a rare one) can seem like a world upturning misfortune that sets you apart.  Online, it is a badge of honour that connects everyone together.

Angela Coulter – paternalism in health care – clinicians underestimate how intimidating the clinical encounter is, patients fear offending their clinician if they assert themselves or offer an agenda.  Clinicians are often unaware of the constraints that prevent patients asking questions in clinic.  Clinicians often believe patients need to be protected from the truth eg uncertainties, bad news.  Patients can often be left feeling inept, diminishing their sense of control.  Paternalistic clinicians often seen as unsympathetic or arrogant, refusing to accept ideas or suggestions.

Try:

  • What do you want to make sure we discuss today?
  • What needs to happen today to make this visit feel successful?

Patient feedback –  can sometimes lead to poor morale – positives need to be celebrated.   Confidentiality must be assured for feedback to be meaningful.