Protecting patient interests

This week there has been a lot of focus on a person’s right to live or right to die. This week the case of Tony Nicklinson and Martin went to the High Court; the two men both have locked-in syndrome and had sort permission for people to help them to end their own lives. You can read the judgement here and there have been lots of thoughtful newspaper and blog coverage of the decision. In a nutshell the Court considered that they could not make a judgement because the implications went beyond these cases and would require a change in the law about assisted dying that needs to happen through parliament. As I followed the coverage of the case this week I couldn’t help but think about the personal implications, what would I want to happen in such a situation (answer – I don’t really know), how would I feel if it was my Dad/partner/brother with locked-in syndrome.

In my Dad’s case he was an incredibly fit and healthy man before he got cancer. He was a postman and walked between 10-15 miles for work, six days a week, for over thirty years. He spent his spare time walking on Dartmoor or supporting Army Cadets. The only time you’d find him sat still was occasionally of an evening, watching a film or re-runs of Dad’s Army on TV. One of my big fears, I think shared by himself and other family members, is that he would have a long and lingering decline. The reality of course is that he has lived for almost five year with cancer and has fought it ever since diagnosis. The thing about fighting is that it comes and goes, there are fits and starts, while Dad has certainly declined and has nothing like the fitness or stamina he once did, he has still been able to actively engage in things. There have only been a handful of occasions where Dad has been passive in his illness, I can probably count them on one hand. Those times, for me, are the scariest. They are the times when it’s like Dad isn’t there, the fight is seeping from his eyes, he is extraordinarily tired and not sure he can fight much longer. There have been about three of those occasions in the last two months, which in itself isn’t surprising as we know he is living on borrowed time now. That said, so far, he has usually been admitted into hospital at that point and given blood transfusions and other treatment, and stabilised and has managed to leave in a few days.

One consolation of Dad having a terminal diagnosis is that it gives you time to think and to some extent, to plan. Dad has a TEP (a Treatment Escalation Plan), this form contains a treatment protocol that was written by the medics treating Dad with my parents, following Dad’s decision to sign a DNR last year. That decision was not taken lightly. It involved conversations between my parents and their GP and various other people involved in Dad’s treatment. The form lays things out in black and white, I can’t remember exactly what it says (although I have a photo on my phone somewhere so I always have it with me) but the wording is something along the lines of Dad’s condition being so severe/advanced/terminal that further life sustaining treatment would be futile. It’s the word futile that sticks in my mind. It is a simple fact that were Dad to haemorrhage or have a cardiac arrest there is no benefit to him in being kept alive. I’ve discussed this before and the challenges of living with that reality here.

The last time Dad was admitted to hospital (about two weeks ago) I was sat with him in A&E as he was being assessed, clutching his TEP form. He said to the nurse asking him questions that he had a DNR and a form, I was quite impressed he said it so matter of factly. For a man who has been emotional about everything of late, who’d cried at people winning olympic medals, at failing to win, at preparing for them, to be able to keep it together when sharing that information is testament to two things in my mind – his strength, and his certainty about his wishes. The nurse asked if they had a copy of that on their notes, I shared the TEP with her so she could take another copy and said that it should be on Dad’s records (last time I looked at his file when we were in it was indeed stapled to the inside front cover of his folder). What she said next surprised me.

She said that if anything happened before Dad was seen by a doctor (there was a lonnng wait, it was a busy night) she couldn’t adhere to that. As a nurse she would have to treat Dad because their doctors hadn’t signed it off. Dad and I both queried this and she said she’d double check with her boss. Dad then piped up with ‘Don’t worry, my daughter knows what I want, she wouldn’t let you’, at this point she said to me ‘of course you know what your Dad wants, and you have the form, so you’d just have to stop us’. When she went off to take a copy of the form Dad asked if I was ok with that, luckily neither of us actually thought it would come to that, but I looked him in the eye and promised him that I’d stop them, even if it required me to physically intervene.

Later on the nurse came back and said not to worry, they had the copy already and it was all sorted. She’d also written on the board 222. The hospital crash team are contacted by dialling 222 and she didn’t wan’t to write DNR on the board, or No to 222 so she’d written it and crossed it out. She explained that it wasn’t nice to see it on the board and she didn’t want to upset anyone. This in itself was fascinating to me. This nurse was brilliant, she was caring, she was banterful, she put Dad at ease….but she was also obviously not that comfortable or sure about protocol or acceptability of withdrawing treatment. It’s no surprise given how little we as a society discuss these things. From my perspective that nurse was trying to balance Dad’s wishes with those of her own and her concerns for other patients.

There in lies the rub. None of us live in isolation. It isn’t straight forward when you consider an individual’s situation because we are all members of society, a patient in a hospital is a piece of a much bigger jigsaw. Whatever judgement or decision is made around the treatment for Tony Nicklinson or Martin, or my Dad on this microlevel, does have an implication for other patients, for the staff and for family members.

This morning I read another article in The Observer that talked about a man, L, left in a vegetative state following a heart attack. The Trust treating him, Pennine Acute Hospitals NHS Trust, consider that it is not in his best interests for them to intervene and offer ventilation/resuscitation if his conditions worsens or if he suffers a life-threatening event. His family are not in agreement. They think it should be for them to decide on his care and they believe it is too early (five weeks since his heart attack) to give up hope of his condition improving. The Court of Protection in London will be asked to make a judgement on this tomorrow.

I feel for L’s family I really do. I also feel for the people treating him. It is an almost impossibly difficult situation. Five weeks is not long to come to terms with the loss of the person who was once in your life, it is sometimes hard to accept the magnitude of the situation and it is hard to accept that there is nothing people can do – as a society we are lead to believe that medical science can cure most things these days. It is a devastating realisation when you come face to face with a situation for which there is no cure. It takes time to accept that reality and I’m sure for some that is never reconciled.

I think we’re really lucky that my Dad has chosen his treatment wishes himself.  I feel grateful that we’ve had a chance to discuss them with him. I actually feel more empowered having been put in a situation where he has given me carte blanche permission to advocate for them, by force if required. I hope it never comes to that. Ultimately these situations don’t tend to be black and white, you can be sat clutching the form of wishes and yet still need to intervene, you can also be sat feeling like you need to advocate for what your loved one would have wanted – in the face of a hopeless reality and a bunch of medically qualified personnel telling you something else – and have no power to do so.

Life and death decisions are complicated and none of us are immune. My advice would be to discuss with your loved ones and next of kin what you’d want to happen in a similar situation. I’m not sure what legal weight a Living Will or an Advanced Directive or a TEP actually holds, but I know it is much easier to confidently advocate for a loved one if you have discussed a situation and know what they would have wanted.

Dancing the cancer dance

Sometimes I wonder whether there is something wrong with me. Given how much time I have spent in hospitals, and increasingly in our local Accident and Emergency Department, I’m not sure which bit of my brain still wants to feast on hospital documentaries, but I just can’t stop watching 24 Hours in A&E. I tend to record it and watch it when I feel able for it, and tonight I watched an episode from a couple weeks ago that just felt uncannily familiar. It focused on a lady called Josephine who was terminally ill with cancer, who was admitted to A&E with severe breathing difficulties caused by a bacterial infection. During the episode the consultant caring for her had to have the conversation with her (and her family members) about whether she would wish to be kept on life support if she needed intervention for her breathing if her condition were to deteriorate. She chose not to, something that I suspect came as a little bit of a shock for her family members.

They showed her daughter, Jackie, reconciling herself to her mum’s decision and discussing it with her niece and her partner and then she said something that cut through me like a knife, because she used words I’ve heard myself use. She said she couldn’t go back into her mum with red eyes (from crying) because she can’t let her think she’s given up on her. Throughout the episode you could see Jospehine’s daughter willing her better, I was torn between thinking she could go easy on her mum and that she was almost putting pressure on her to stay alive, and recognising myself the impossible situation you find yourself in knowing that if you show doubt you are giving too much away to your parent. There is a very real fear that if you stop believing in them, then they’ll stop believing and die. I don’t think the fear is of them dying in itself, so much as them dying prematurely because they are exhausted and you haven’t convinced them to keep going. Jackie also said something else I’ve muttered myself before, ‘Not yet, it’s too soon’.

I have danced that dance many times. It comes up regularly, although often the tune is slightly different! Should I stay over at my parents to enable my Mum to get a good night’s sleep or does that signal to my Dad that we both think he is more poorly than he realises; should I go on holiday/take the weekend away that has been planned for months and risk Mum being on her own if he deteriorates quickly and maybe not seeing Dad again or do I stay home, play it safe and show my inward concern to him; should I go and get medical help when his breathing starts deteriorating even when he is on oxygen in casualty, or does that make him panic. It is really hard to know how much encouragement to give someone, and when you are applying pressure to them, rather than supporting them reach an equilibrium again.

We are very lucky that Mum and Dad had a conversation very early on when he received his terminal diagnosis, with a nurse from the palliative care team. Dad signed a DNR last May and has had a treatment escalation plan written out since then. Mum keeps it in their hallway, by the phone, so we can flash it at the ambulance personnel whenever they arrive – and they always seem as relieved as we are that it is written, plain and simple, in black and white what intervention is appropriate. It got me thinking tonight perhaps we should all have conversations about what sort of life support we’d want if the need arose, rather than waiting until it is needed.

But I digress, this episode of 24 Hours in A&E featured a lovely nurse, Abbie, who was reflecting on caring for a terminally ill parent. She said:

“It would be my worst nightmare to have to look after one of my parents, if they were passing on. Here’s this person that you love so much, who brought you into this world, you know, they nurtured you to an age where you can finally start looking after yourself. They put you through schooling, you know help you get your first job, they help you do absolutely everything, every time you have a break up you always ring Mum or Dad crying, and I just think for the tables to be turned, where this person who you just think is the most amazing person in the world, is now lying in a bed, and their life is slowly coming to an end, and now you’re the one to look after them and try and nurture them and make the other end of life a little bit better, that must be just, it would be just so sad, but then maybe in a more positive way you can kind of give back what they gave you”

Josephine stayed in hospital for seventeen days. She died at home two weeks later on the 28th March 2012. I hope that by the time Josephine died, Jackie felt that the time was right. It must feel impossible to give up, but in a way I think you know when is right. I very much hope that I get the balance right between being optimistic and realistic, between coaxing and believing, between providing support and providing pressure. In the end I’m not sure it matters once we are all doing our best, as someone else said in the episode there is no real preparation for cancer and dealing with a terminal illness, I guess you just do the best you can.

This week has been a tough one, Dad was taken into hospital on Monday, there were no beds so he couldn’t be kept in so I took him home at about 7pm. We were back up to meet his consultant on Tuesday where he agreed that Dad should come off the palliative chemo he had been receiving. This is quite a signifiant decision really, but Mum and I reflected afterwards on how abrupt an ending it felt. There is no more treatment, Dad was first offered chemotherapy this time last Spring, he kept declining the offer until this Easter when he was so poorly we all thought he was going to die. The next time he was offered it he took it and he has been receiving it ever since.

For anyone who isn’t familiar with chemo it really does take over your life, the appointments, the drugs, the nausea, the infection risk, the tiredness and fatigue, the infections and other side effects. It has taken a gruelling toll on Dad’s body, which I guess isn’t too surprising given that it is effectively poison he is being given. All of that said, before he started chemo his tumour was bleeding so heavily that he couldn’t last a week without a blood transfusion, the chemo has worked some magic and despite all the other side effects, touch wood, for the moment the bleeding does seem under control. My sister’s second child is due in a couple of weeks so if all goes according to plan Dad will become a Grandad for the second time before he leaves this world.

On Wednesday we buried my grandfather, another reminder of the finality of life if any of us needed one. There was a definite sense of dress rehearsal to the event, it prompted many questions about what Dad would wish when the time came. Dad side-stepped most of this chat, with the occasional banterful comment thrown in, and when I saw him today he was still joking about what he would (or rather wouldn’t) want to wear for his funeral. My emotions about Dad’s situation swing fairly regularly from gratitude to despair, although most of the time they sit fairly in the middle at exhaustion.

As I watched the episode of A&E I think what I realised is that programmes like that make it all the more normal. Let’s be honest it is not normal to make banter about or so regularly to discuss funeral arrangements with your parents at my age, it is not normal to be up till the middle of the night in A&E departments patiently waiting for a bed, it is not normal to continue with the trivial every day matters when seconds earlier you were contemplating the fragility of life…and yet it also isn’t as isolating as it can sometimes feel, there are hundreds of people who face the same reality as us, each and every day. I guess cancer throws out any sense of normal, you readjust and live your lives with a different barometer, you dance to a different tune, and in the end you do your best, it’s all anyone can ask for.

D.N.R

Last week I wrote To chemo or not to chemo that talked about Dad’s latest dilemma (unsurprisingly, whether to have chemo or not) and the real life implications of patient choice for him, my mum and his family and friends. Dad has chosen not to have chemo and to wait and see what happens. This week he had an appointment with one of the nurses from the palliative care team to discuss his end of life options. Him and Mum have talked about this a little, I’ve had one or two conversations with him about it but mostly I think Dad would prefer to not think about it.

He has made two decisions that I imagine will turn out to be critical – he has decided that he doesn’t want to die at home. Everything I read seems to suggest that people wish to end their days at home but not my Dad, he’d prefer to be in a hospice, the hospital or a care home. I think I understand his logic – my parents home is where they’ve lived their entire married lives; it’s where we all grew up and I hope, for as long as she wants to, it’s where my mum will remain; my grandparents, in their 90s, live next door; and I suspect that Dad doesn’t want it to be the home of sad memories (even as I type that I know I’ll return to this point at some stage).

The other decision Dad made was to sign a Do Not Resuscitate, a D.N.R. The practicalities of this mean that he needs to make an appointment to see his GP and sign it with him, but they had the discussion this week and he’s decided that he doesn’t want resuscitating, should anything now happen to him. I think I understand that decision too, he knows that he is terminally ill and so why would he choose to prolong his life – and yet – he is also desperate to not just sit back and accept his fate. It’s a strange old balancing act knowing that your time is limited but not wanting to give up hope.

This week he is finishing off building a Wendy house for my niece, her daddy left for Afghanistan last week, so I’m sure my sis has appreciated the company as much as Libbie will love it and I hope it will last for years to come. It’s my mum’s birthday later this week and rather than come back for it Dad is going down to my brother’s for more DIY! I think my ma is trying to adjust to life in the future, she keeps talking about needing to try and get used to life without Dad, I’m worried they’re passing by what time they have but Mum says she is happy as long as Dad is happy….so there we are. I’m determined we’ll get together for mine and mum’s birthdays next weekend so it won’t go completely without notice – I’m not as grown up as mum about things and I’m feeling the need to spend some time together as a family while we can.