Teaching MrsP

Counsel for the different parties were:

• Joseph O’Brien (instructed by Hill Dickinson) for the Trust
• Vikram Sachdeva (instructed by the Official Solicitor) for the Mrs P
• Victoria Butler-Cole and Annabel Lee (instructed by Irwin Mitchell LLP) for Mrs P’s daughter. 

Joseph O’Brien KC

Vikram Sachdeva KC

  Victoria Butler-Cole KC

Annabel Lee

Mrs P smiles, frowns etc; she appeared to nod when asked if she remembered her dog. When asked what radio channel she wanted, she said ‘four’. She nods and shakes her head ‘automatically’ during conversations – no consistent evidence that these are appropriate ‘Yes’ or ‘No’ responses to particular questions. Mrs P has contractures (can be painful). Her limbs are stretched by physio (she goes red, breathes heavily, frowns, tenses muscles). When we try to move her limbs she resists – stops us from moving them.

Mrs P sometimes appears to show discomfort. Naso-gastric tube has been dislodged 55 times. Patient has mitten on hand to prevent her pulling out her nasogastric tube.

Occupational Therapist reports seeing the patient two to three times a week. She shows Mrs P photos etc and checks if she can respond.

Tear ran down patient’s cheek looking at photo of herself and her sisters. No response to spray of perfume. No response to hairbrush. Mrs P was ‘attending to photo album’, i.e looking at it and tracking it when moves. Tear rolling down cheek was interpreted as meaning that Mrs P was sad about the photos but Occupational Therapist witness agreed that she couldn’t be sure.

Speech and Language Therapist is working with patient on tracheostomy-weaning & on communication. Volume of secretions means it may be difficult ever to remove tracheostomy. Suctioning of secretions ‘doesn’t look a pleasant experience’. Counsel for Mrs P asks about effect of nasogastric tube and mitten on ability to communicate. ‘Not much’ says SLT. Testing with broad hand movement.

Nurse reports that patient smiles + relaxes in bath, grimaces with suctioning (‘I’d say it hurts’) and definitely cries with nasogastric tube insertion.  Judge says: ‘Cases of this kind are acutely distressing’. Nurse says it’s the first time she has encountered it, and yes she’s very distressed. Nurse is thanked by judge for giving evidence today, despite her huge distress.

Treating doctor saw patient looking at TV. Patient touched TV screen as if trying to move TV closer. Behaviours are congruent with fluctuating consciousness in Minimally Conscious State.

Treating Dr concerned that staffing levels have meant that Mrs P has not had level of therapy that might enable progress. Patient can tolerate  tree hours in her chair, they try to do this every day but can’t because of staffing issues + shortage of chairs.

Mrs P actively disengages from therapy (e.g. closes eyes at photos). Therapy opportunities are limited in care homes too.

Treating Dr + Independent Expert agree there will be no improvements in Mrs P’s motor control, swallowing, or ability to speak (Mrs P can ‘vocalise’ but not speak). They also agree there will be no improvement in her ability to think or remember. Treating Dr’s view is that clinically assisted nutrition and hydration should be continued. Reports patient is not feeling pain or distress at present, except in relation to nasogastric tube and suctioning.

Independent Expert Witness points out that suctioning is painful + unpleasant. All agree that Mrs P repeatedly tries (& sometimes succeeds) in removing nasogastric tube: that’s why a mitten has been put on her hand. Barrister representing Mrs P (via the Official Solicitor) says Mrs P should have had PEG tube in February/March.

Judge asks ‘Why am I sitting here in October listening to this’, given that this means ’10 months of avoidable agony?

The two neuro-rehabilitation experts are asked about Mrs P’s  life-expectancy if clinically assisted nutrition and hydration is continued . The doctors both agree that Mrs P is only likely to live for a few years (she also has COPD – Chronic Obstructive Pulmonary Disease).

Daughter says: ‘The only person who’s missing in this courtroom is my Mum’. She was a fiercely independent lady. Very right wing. Very religious – her own brand! She wasn’t frightened of death. Mum thought she’d go to heaven, see Jesus & her friends again. She was frightened of being how she is now.

Judge asks: ‘How did your mother deal with her CPOD?’ (Chronic obstructive Pulmonary Disease).

Daughter: She put it in a box & put a lid on it. She was proud and private. She hated being seen as vulnerable.

Judge asks: How do you feel about visiting your mother?

Daughter: I don’t like it.

Judge responds: There’s no shame in that. Be brutally honest

Daughter: My mum has gone. It’s a very sharp reminder of what I’ve lost and what Mum has lost. She’s there and not there. The essence of her, the personality of her is gone. And I miss her.

Daughter has provided an email from her mother in which Mrs P wrote: ‘Did you see that thing [TV programme] on dementia? Made me think of dad and what a travesty of life his last years were [with dementia]…You know I miss mum, and I still talk to her everyday but it is a comfort that she went quickly & I’m still haunted by how he ended up…Get the pillow ready if I get that way’.

Mrs P’s other daughter supports her sister’s view of what their mother would want. She said that her mother would be  horrified by present situation. Even when she needed help would not accept it. She’d be horrified to be seen in this state.

I was initially told she could be home in 6 months, this hasn’t happened. I used to want treatment to continue but I’ve read the Expert Witness opinion and I have realised the situation. I now want the feeding to be withdrawn – for her (Judge asks: ‘what do you want for yourself?’). Partner responds: ‘I want her to recover, to the extent that I could speak with her.’ She’d be horrified if I let her continue in that state. She had dignity. She wouldn’t want this. I love her very much.

Partner says that Mrs P would want level of recovery that meant: ‘She’d want to be able to read and have a conversation at a minimum.’

This witness was a friend of Mrs P, and had known her for over 40 years. She says Mrs P was very worried about losing eyesight – loved to read and be on committees. Friend gives moving testimony on decision for herself & others, & conversations with Mrs P when they both had COPD diagnosis, ‘we were both a mess’. Friend talked with Mrs P about her own diagnosis and Mrs P said she didn’t want to go through that.

This young boy was present throughout the hearing – and decided he wanted to contribute, a request allowed by the judge and very sensitively handled. One of the things he said was: My grandmother loved to be independent. If there was anything she couldn’t do herself she’d insist she could do it herself. 

[Mrs P] told me about being in Church & they sang a hymn that she planned to have at her funeral – but we did not discuss death.

You can’t answer for anyone else what they’d want at end of life unless they’ve written in down e.g. in legal document.

End of life decisions should rest with the medical profession.

I don’t believe I have any right to make a decision about whether my sister lives or dies.

Sister3 says she and patient never discussed end-of-life issues – ‘No, only she [Mrs P] said “I know I’ll never make old bones”.’

Sister3 is clear about her own views: ‘I believe in the sanctity of life’.

She also expresses concern that her sister is not dying, and concern about the manner of the death (if feeding tube withdrawn). Judge responds with discussion of palliative care.

Our answer: Mrs P’s sister’s did not want to be involved in a decision to stop her life-sustaining treatment. They expressed views such as ‘End of life decisions should rest with the medical profession’ or ‘I believe in the sanctity of life’. They did not say anything which contradicted the characterisation of Mrs P’s own views as presented by Mrs P’s daughters, friends or grandsons.

Our answer: Sometimes the judge, Mr Justice Hayden, seemed to make a clear effort to demonstrate respect and concern for witnesses, such as for the nurse who was distressed giving evidence. Sometimes he also provided reassurance – such as when he talked about the palliative care that would be provided to Mrs P in response to a sister’s concern about potential pain. The judge could also be critical at times – such as when he criticised the delay in bringing the case to court.

The judge decided to refuse the Trust’s application to put in a PEG and continue providing clinically assisted nutrition and hydration. In his judgment Mr Justice Hayden stated:

“[Mrs P’s] present high level of dependency and minimal awareness would, to her, have been ‘a travesty of life’…. Her incapacitous state does not mean her wishes can be disregarded. Her family, each of them, has permitted her voice to be heard and thus enabled her to assert her own autonomy. For the avoidance of any ambiguity I emphasise that I decline the Trust’s application.”

Mrs P was moved onto a palliative care pathway and allowed to die.

A link to the full judgment (with extensive clinical details and more information about the judge’s reasoning) can be found here: https://www.bailii.org/ew/cases/EWCOP/2017/23.html

A critical piece published in ‘Christian Today’ about a different case uses this quote from Mrs P, alongside others, to question how decision are being made. Access this article here: https://www.christiantoday.com/article/the-sad-case-of-rs-whatever-happened-to-the-sanctity-of-life/136403.htm

29.               Ms Butler-Cole, who appears on behalf of Q [Mrs P’s daughter], has conveniently distilled what she submits are some uncontroversial principles to be taken from the evolving case law. I agree. Though at risk of repetition I think it is helpful to incorporate them here concisely, having introduced a few amendments of my own.

i)   The sanctity of life is not an absolute principle, and can be outweighed by the need to respect the personal autonomy and dignity of the patient: Aintree v James [2013] UKSC 6 at [35];

ii)  There is no prohibition to conducting a best interests analysis of the continued provision of CANH even though MRS P is not in a vegetative state: W v M [2011] EWHC 2443 (Fam) at [102] per Baker J;

iii)  There can be no further guidance beyond the wording of s.4 other than that “decision makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or would be likely to be; and they must consult others who are looking after him or are interested in his welfare, in particular for their view of what his attitude would be.”  Aintree at [39] per Baroness Hale.

iv)  Where the patient’s condition may improve, a best interests decision may be based on the ‘best case scenario’ as advised by the relevant clinicians and experts: Briggs overview at (25) per Charles J;

v)  It is incumbent on the court fully to investigate and consider the values and beliefs of the patient as well as any views the patient expressed when she had capacity that cast light on the likely choice the patient would have made and the factors that the patient would have considered relevant or important: M v N at [70] per Hayden J, Briggs at [54] per Charles J;

vi)  Where the patient’s views can be ascertained with sufficient certainty, they should generally be followed (Briggs at [62] per Charles J) or afforded great respect (M v N at [28] per Hayden J), though they are not automatically determinative.  ‘…if the decision that P would have made, and so their wishes on such an intensely personal issue can be ascertained with sufficient certainty it should generally prevail over the very strong presumption in favour of preserving life. Briggs at [62ii] per Charles J.‘…the ‘sanctity of life’ or the ‘intrinsic value of life’, can be rebutted (pursuant to statute) on the basis of a competent adult’s cogently expressed wish. It follows, to my mind, by parity of analysis, that the importance of the wishes and feelings of an incapacitated adult, communicated to the court via family or friends but with similar cogency and authenticity, are to be afforded no less significance than those of the capacitous.’  M v N at [32] per Hayden J;