Gambling With Lives? Who’s Life Is It Anyway?!

Gambling With Lives

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An excerpt from the above post by David Hills (a vehement opponent of the Saatchi Bill), below which is my reply in support of the legislation:

“It very much feels like the campaign is attempting to play both sides at once here. These quotes are both from the Telegraph – the bill’s media partner – so we can be confident they have been approved, and that they say exactly what the bill team want to be said:

The Telegraph:

Doctors could be allowed to experiment on dying patients with novel treatments under a new bill brought by Lord Saatchi which looks set to become law.

The Telegraph again:

A few respondents have asked Lord Saatchi to ensure the Bill cannot be used for medical experimentation. “I do not want doctors to treat patients like mice,” he said. “This is a consultation and we are listening. We are talking to Jeremy Hunt’s team about how we might make the Bill even clearer and stronger in this regard.”

These statements appear to me to be contradictory.“

Click HERE to see the full post

My response:

This feels at risk of being a clever wordplay more than an analysis. Pinning colours to the mast; I’m a bill supporter, but not without reservations about control and implementation.

In my opinion the bill SHOULD broach both points about doctors’ responsibilities when supporting patients to make choices about non-protocol treatments:

  1. Primacy of a patient’s best interests &
  2. The primary reason for supporting a patient to obtain new treatment must NOT be experimentation.

The latter reinforces the former. Wording differs from mine, so this comes down to interpretation. NO law is written to account for all eventualities. That’s what the in-built oversight in the decision making process and judges are for. To interpret the spirit as well as the letter of the law.

If we still disagree (expecting we will) I’m unclear what explicit fallout you foresee coming from this reported contradiction in terms. The lottery point is a well argued one about best use of scarce resources, but I can’t see how the two points link. The resource use case will be part and parcel of the risk assessment between doctor, MDT, lead official and (if self funding/privately insured) the patient and/or their insurer.

Yes some doctors support innovation some of the time…

This is about leveling the playing field nationally, so those not blessed with flexible, well informed doctors supported to innovate by their institutions (the doctors who understandably don’t see a need for the bill) can raise awareness of their rights to investigate new things. Don’t underestimate how many hard pressed, narrowly specialist or generalist doctors cannot or will not research promising new treatments for patients. Typically assuring them that looking further than approved treatments is unnecessary, inadvisable or pointless because of time constraints and/or potential noise, managerial pain and red tape that goes with making a non-standard choice.

Availability and quality of care differs nationally and globally

Going outside your own hospital, let alone your PCT to find a supportive doctor is very, very hard. Not least because the NHS is years away from effective information sharing. There’s also the small matter of the patient’s often rapidly declining health, plus financial and practical ability to find and visit someone else appropriately qualified. There’s no useful “trusted reviews” site comparing experience, expertise and performance for docs and your chances of dying depending on where you live, do differ.  The table below is from the King’s Fund paper “How to improve cancer survival – Explaining England’s relatively poor rates” June 2011, authored by Catherine Foot and Tony Harrison.

Comparative 5yr Survival

The UK is clearly under performing in the area of cancer care and that disparity isn’t just international.  I have seen statistics for pancreatic cancer (the hard to treat disease I know most about) showing patients in affluent London areas (notably Westmister) have a statistically significant increased survival chance.  Even allowing for geographical variance in deprivation (deprivation is thought to increase incidence of cancers, but the effect on % mortality is less clear) this variance must, in part, be down to the quality and concentration of medical experts.

Support to find and gain access to the best care is lacking

Given that there is geographical inequality globally and regionally (especially a rural/urban split) in availability of specific treatments and availability of specific kinds of medical knowledge, doctors/MDTs/PCTs should not balk at sharing care of patients with other more specialist, less busy or more willing doctors, but all too often they do.

The Saatchi Bill is NOT a panacea. It cannot cure cancer unilateraly and cannot wipe out national and international cancer care inequality. What it can do is clarify the rights of patients and encourage doctors to offer good quality care. It will no longer be acceptable to dismiss a request to look into a new treatment on spurious or pure protocol based grounds.  Even if patient requests are denied, the improvement in ground floor understanding of the newest and best treatments can’t help but make a positive difference. If they are approved it will add to the store of evidence about newer treatments.

In the final analysis, will this make patients more vulnerable to quacks? I say no. Those who tend to go “off piste” towards utterly untested treatments, will still do so if determined, Saatchi Bill or not, but have you considered that many desperate departures into the unknown are caused by intransigence or protocol paralysis from the one or two doctors and hospital boards patients have local access to?

My own analogy

When planning to have my children I wanted home births because I was terrified of being put under pressure to have interventions after hearing about others’ experiences and reading up on local stats. People thought I was crazy. I wasn’t about to go alone and barefoot into a field and give birth, I had a private midwife and was happy to go to hospital if things didn’t work out.

One cautionary story always came up. The mother who stayed at home, with no medical support and bled out. Well you know what, I tracked down the source of that local horror story. The woman in question had an appalling first labour in hospital due to negligence and rather than taking her fears into account, supporting her and educating her about risks, the hospital simply told her a home birth wasn’t an option.

I ended up with two hospital births because, unexpectedly, things did change.  I managed my risks and could do so because I was supported to make my choice by independent experts. My ‘novel treatment’ e.g a home birth, wasn’t right in the end, but thank god, for my mental well-being, I felt I had choices.  With an individual birth, just like a terminal illness, you don’t get any do overs and every single situation is unique and decisions are time critical.

What if nothing changes?

It will be fine. As long as doctors offer the best ages old approved treatments. Treatments periodically updated when existing drugs are tweaked and re-patented by big pharmaceutical companies. Drugs that tend to trade minimal survival benefit for greater toxicity with each iteration.

There’s no need to fret even if doctors don’t read up on and bring news of relevant trials and breakthroughs. Most patients will die without too many questions about their care and the ones that do want to find out about and travel to take advantage of something novel can usually be stalled until the problem solves its self….terminally. That way questions about care can’t build up too much of a head of steam.

I speak to David offline as we’re both interested in not missing key points about the many and varied discussions around the bill.  I’m sure he will soon post a reply.

2 replies »

  1. Depth

    “Those who know don’t talk.
    Those who talk don’t know.
    Close mouths.
    Shut doors.
    Blunt sharpness.
    Unravel knots.
    Soften glare.
    Return to dust.
    This is Oneness.”
    ~ Lao Tzu, Tao Te Ching, chapter 56

    The injury was chronic and the pain was something fierce.
    He took aim with his instrument; short pulses did it burst
    Of strong coherent infrared he guided for to pierce
    The depths of inflammation where he found it to be worst.

    He’d worked out this procedure with a colleague; they’d thought through
    Which frequency this YAG and neodymium device,
    Meant as a surgeon’s tool, emitted was ideal, and too,
    For best effect to tone it down just where it wouldn’t slice.

    The innovators, both experienced in their own fields,
    Experimented deeply ‘ere their patients heard the news
    And found their new technique, among all others extant, yields
    For many chronic ailments the best treatment they could choose.

    I said: Why is the world not hearing from the two of you
    The details of your novel form of laser therapy?
    If writing is the trouble, I could do an interview,
    That covers both your method and its deep efficacy.

    He said: One doctor pioneered injection treatments, went
    The lecture circuit, speaking on the decades of his work –
    As he’d administered three hundred thousand shots and spent
    Late nights collating great results – and guess what was his perk

    For speaking out? Not one physician followed up his talks
    Expressing any interest in a method shown to heal.
    Instead, the medical review board’s stoolie surely stalks
    Symposia: for mail came stating he’d be forced to heel.

    Required for him was, in their smooth terms, remediation.
    He chose a young retirement – and am I any tougher?
    Inventiveness is disallowed; this deep’s the situation:
    You fly below the radar, or your patients’ health will suffer.
    ~ Thanks Always Returns

    Liked by 1 person

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