A meandering wander, or a hard climb?

Bad news is never welcome.

Bad news about one’s family is even less welcome.

When patients come to hospital, there is usually a very good reason. That might be a short, acute illness which requires a short stay, it may be a prolonged series of unfortunate events, which render a loved one devoid of that vitality that once defined them.

When it comes to chronic conditions – in particular those where there are few treatment options which affect mortality – be that COPD, dementia, certain cancers, heart failure (to name but a few) there is a variation in the trajectory which each patient takes, but the general direction of travel is often quite obvious to those looking in from the outside – and indeed, has been mapped out for a number of them – this is an example from NHS Lothian:

Illness trajectories – from NHS Lothian Website

One problem which I experience all too often is that the view from the ‘inside’ of some cases is very different indeed.

It is not unusual for me to meet patients who are struggling with their daily care needs, and have recruited family and friends to help with daily tasks which most healthy people don’t give a second thought to; walking to the toilet, having a shower, getting into or out if bed.

The human race is great at adaptation – it’s one of the reasons we have taken over our globe so completely. Individuals are great at adaptation too.

Adaptation and compensation for deteriorating health is great, but can become a charade, a way of covering up a slow decline into dependence.

And here is the problem, people often cope so well with their failing health, that to point out the trajectory can come as a shock, and as with all major revelations, patients can experience the full range of the Kubler-Ross grief reaction: (put in picture)

Kubler Ross Grief Cycle from http://www.empowernetwork.com

However, if, as doctors, we go along with the impression that all is ok, we can end up colluding with patients in a fantasy that all is well, and there is no need to worry.

In chronic conditions that lead to death, is this collusion actually good medicine? To expose a patient to the full, often stark, reality, of their condition in an explicit way could do significant harm, and precipitate worsening meta-problems such as anxiety or depression, and their coping could worsen, but equally, I hate the way that many end of life conversations seem to fly in the face of years of ‘its alright, we’ll keep you safe’ type conversations, and rather than a slow unveiling of the terminal phase of an illness, feel more like a push off a cliff into the void.

I don’t want all of my patients with chronic conditions to buckle under the weight of their diagnosis, and equally don’t want them all labouring under a false impression of invincibility – or an unrealistic expectation of durability (the futile encouragement from relatives that an elderly relative will ‘fight’ a metastatic disease, or multi-organ failure is tragic to witness).

I would, however like to be free to have more honest conversations at the right time, in the right way for each patient.

The problem seems to be multifactorial, but a culture of giving hope where perhaps there should be gentle revealing of reality is one if the key barriers. Death and illness seem to be failures in our clean, tidy, forever young western world. However, brutal honesty is not always helpful, and patronising collusion seldom is.

The right balance is different for each patient, but societally I think we need to start to reconnect with the frailty of the human frame, and not believe the hype about living forever in perfect health.

Lest we forget: life is a sexually transmitted disease with a 100% mortality rate…

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3 thoughts on “A meandering wander, or a hard climb?

  1. I’m struggling with the notion that there may be a way to remain transparent and honest while protecting a patient from ‘buckling under the weight of their diagnosis’, even if that’s what you want based on an honest desire to prevent possible anxiety or depression.

    It seems unreasonable that a Clinician would hope to, as you’ve described, ‘be free to have more honest conversations at the right time, in the right way for each patient’. The Clinician knows what he/she knows, when he she knows it and I hope, without exception, that all facts are presented to the patient at the earliest opportunity. No one can know his/her fate beyond the present moment; to assume the opportunity will exist to ease into a series of conversations seems almost inconsiderate.

    As you’ve said, balance is difficult to find but it’s my opinion that the knowledge you possess be shared in its entirety as early as possible, even if there’s a chance the ‘stark reality of a person’s condition’ will cause them to feel as if they’ve been ‘pushed off a cliff’.

    Your personal insight is invaluable to the point it may be irreplaceable and since there is no way of knowing your fate beyond a single moment in time, I fail to see how anyone might assume they will be able to provide a ‘slow unveiling of the terminal phase of an illness’.

    • Dear Paige – thank you for this,

      The concept that one cannot know one’s fate, and therefore full disclosure of the facts is essential at all times is a powerful one.

      I think that in practice there are many constraints to delivering news of a terminal illness in such a way.

      In the past, many patients who have discussed how bad news was presented to them have felt aggrieved that it was done in this fashion, and a full declaration of the terminal nature of a disease left them feeling entirely devoid of hope, even in cases where there was indeed hope.

      In the case of non-cancer organ failure, the trajectory if illness can be incredibly unpredictable, and response to therapy can be wildly variable between patients, and therefore the terminal (if we take that to mean last 12 months of an illness) phase may seem many years away, and come much sooner, and for some patients, their ‘last 12 months’ by most predictive factors can be several years.

      I think this is where, in a ten minute conversation it is incredibly difficult to unpack the correct, individualised information and have an accurate grasp of that person’s own prognosis.

      I also think that certain patients will not wish to know, not necessarily owing to denial, but perhaps avoidance of the cognitive dissonance if discussing ones own death whilst struggling to remain very much alive.

      I hope that brining patients to a realisation or open acceptance of the trajectory of their illness is not a form of deception, but a partnership where both parties find the right time to have a full and frank discussion having sounded each other out over a longer timeframe than many clinics allow in one visit.

      I completely agree that the knowledge imbalance between physician and patient should be minimised as much as possible, and patients should be empowered with knowledge wherever they wish to be – determining the level and presentation style of information the patient wishes for is the fulcrum, and too often physicians sink into old roles (sometimes according to patient choice. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1490136/?report=classic )

      Thank you for your insight, and I hope that I’ve clarified a bit the motivation which underpins some decisions to avoid full disclosure – an ideal I aspire to, but sometimes feels wrong in the moment.

      As I move from an itinerant trainee to a more settled post I hope that I’ll be able to develop clinical systems that allow me to move closer to an ideal of shared decision making, on the patients terms.

  2. Thank you for taking time to expand, in reply to my comment.

    I appreciate your compassion and understand the statistical references that help quantify, what you see as, a need for a more delicate approach to the end of life conversation but I’m still left thinking the concept is overly idealistic in relation to the importance of full disclosure. Professional transparency is vital in any relationship, whether it be a Physician or a Structural Engineer who bares the responsibility of telling an owner that the foundation of their home is in jeopardy and likely to collapse. The owner may not be able to afford the financial undertaking of repair but the Engineer is still responsible to the owner to share full details. How the person reacts may not always sit comfortably with the engineer and, I don’t mean to over simplify the comparison, it stands to reason that a professional, regardless of occupation, may wish they could delay bad news. How a person reacts is not within a professionals control and I don’t think it’s the right of a physician to hold back significant data, even with the best of intentions.

    Perhaps it’s not the timing of the delivery, but a system that needs to be in place immediately following disclosure of information. The patient/home owner has a right to information that will give them the best chance to make appropriate decisions. The professional has an opportunity to offer options and data once they’ve shared their knowledge. You (no one) can affect how someone reacts to bad news. I don’t think it’s your right to withhold information.

    You also touched on death and illness seeming to be failures in our clean, tidy, forever young western world and you’ve made reference to the hype about living forever in perfect health. Somehow these points seem unrelated to the topic of delivering end of life messages and, in my opinion, would be best addressed separately.

    I appreciate your point of view and am not saying you are wrong in any way. I appreciate your opinion and the level of concern you display regarding the potential for negative reaction to delivery of ‘bad news’.

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