Archive

Posts Tagged ‘family’

Protecting patient interests

August 19, 2012 3 comments

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.

The power of short term goals

August 18, 2012 6 comments

About two and a half years ago my little sister gave birth to my gorgeous niece. It was about that time that I started blogging, partly because I hoped that I’d be able to record what happened in life and give her a sense when she’s older (if she wanted it) of how awesome her Grandad was….at the time I never thought she’d live to be old enough to actually remember her Grandad or know that for herself. Dad had lived with bile duct cancer for two and a half years when she was born and living long enough to meet her had been a significant motivation.

This was the two of them when she was a few hours old in the hospital

If anyone had said then that Dad would get to see her grow into a toddler and maybe even live long enough to meet her younger sister (if medical imaging is correct), I don’t think any of us would have dared hope so, never mind believe it.

Yet here we are, my sister is overdue and is going to be induced next week. Dad has been really poorly over the last weeks and months. About ten days ago he started coughing up blood, this is a new development for him. He had occasionally vomited and has been bleeding internally (which was the reason for the palliative chemo) but never before had this happened. I wasn’t at my folks house but Mum rang to say what had happened and I met them out at the hospital. To cut a long story short Dad spent three days in hospital as they stabilised him, all the while waiting for a bed at our local hospice to become available so he could go there for assessment on the way home. Last weekend there was still no bed available and Dad didn’t want to spend the weekend in hospital (it was particularly unpleasant that week, if you can remember that far back it was sunny, and there was no air on the ward and half the windows had been screwed shut which didn’t exactly help). Dad convinced the hospital palliative care team that he was good to go home and home he went.

We watched the Olympic diving together last weekend, Mum Dad and myself. I think we all shed a tear when the video intro to Tom Daley was played – his Dad was only 40 when he died last year from a brain tumour. He was 40 and Tom D was a seventeen your old lad, training for the Olympics and studying for his A-Levels. He won bronze last weekend and the local paper informs me that he maxed out on his results, with 3 As and A*s, what a success. I am almost (not quite, steady on) but almost twice Tom Daley’s age and I am seriously struggling to get my head around my Dad’s situation still. I don’t think anyone can underestimate the scale of his achievement.

The last fortnight has felt different to any that have gone before. Mum and I were out of kilter (which rarely happens) but meant we weren’t communicating very well. Dad was very, very low and has now seriously picked himself up again, fighting all the way. In terms of lists of things I never thought Dad would live to see, London 2012 was up there too. For all the complaints about us being a nation of fickle slobs jumping on the Olympic bandwagon to become armchair pundits, I’m not complaining, it has seriously helped Dad’s positivity and determination, so #ourgreatestteam can take a bow as far as I’m concerned.

So, here we are. The middle of August 2012. Dad has a matter of days (hopefully) until he becomes a Grandad again. He is also now less than four weeks away from his 65th birthday and a very significant transaction. My Dad joined the Navy as a teenager and worked ever since, until he took early retirement and two months later was diagnosed with cancer. Having worked all his life he is incredibly determined to claim his pension, at least once. Some fairly powerful short term goals going on there.

One of the absolute hardest things about life at the moment is the lack of certainty and structure. The inability to plan more than a day or so ahead. The fear I have to making commitments or booking a holiday. The constant niggle when I try to make arrangements. I’m on standby duty for my sister, she has mates around all weekend and is booked to go into hospital next week but if she goes into labour on Sunday night I’ll be jumping in my motor to get to her’s to look after number one niece while number two niece arrives. As much as I hate uncertainty these days, and hate not knowing if I’ll be called on, for this occasion I’m chuffed. I can not wait to visit a hospital for a good reason and more to the point I can’t wait for my Dad to meet his granddaughter. I’ll make sure when she’s older that she knows what an important part she played, a solid strong motivator for her Grandad to hang on and find some more energy and courage to live a little longer, fighting a hideous disease.

A month or so ago my sister got upset when I rang her because she couldn’t do anything to help. I reassured her then that she was doing more than she realised, she was reproducing, she was carrying a ray of hope in her belly, so much more than I could ever have done. After all its the short term goals, however small and insignificant in the big scheme of things, that provide the moments that make life worth fighting for.

***Update*** My new niece, Phoebe George, arrived last night (19 August) weighing in at 8lb 6oz. I’m hoping to get to meet her the day after tomorrow and will post some photos afterwards. Next goal is for Dad to meet her….watch this space

Dancing the cancer dance

July 22, 2012 4 comments

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.

Former magistrate was ‘man of people’

July 19, 2012 2 comments

A former Torbay magistrate once described a ‘man of the people’ by a court colleague has died aged 94. Bert Langmead, a retired manager with the Post Office, joined the bench in 1962 and served on it for 26 years. During his last nine years on the bench until he stood down in 1988, Mr Langmead was also chairman on the licensing justices. When Mr Langmead retired from the bench, numerous tributes were paid to him by policemen, solicitors and court officials. Colin Jones, who was clerk to the court at the time, described Mr Langmead as

“A man of the people” and added “You take with you not only our thanks and respect but our genuine affection and goodwill”.

Retired Torquay estate agent Barney Bettesworth, who served on the Torquay bench from 1975 to 1990, remembers his former colleague as someone who brought a common-sense approach to administering justice.

“He was a very amiable guy who was well balanced and brought a level-headed approach to the bench…I remember him as being very down to earth and someone I respected hugely during my time as a magistrate”.

During his time as licensing chief, Mr Langmead was critical of the drinking culture which was starting to develop among young people in Torbay. He told the Herald Express “Young people today are being conned – there is more to life than just boozing yourself to death”.

Mr Langmead was employed by the old General Post Office for 46 years. He joined in 1932 as a telegraph boy and worked his way up to postal superintendent in Torquay via stints in Teignmouth, Exeter and Paignton. He and his wife Margaret were married for 71 years. They met at the youth club run at Christchurch, Ellacombe in Torquay when he was 13 and his wife to be 11.

Gran and Grandad’s 67th wedding anniversary on my sister’s wedding day in 2007

In the months before the outbreak of World War Two, he enlisted in the Territorial Army and when was was declared was posted to France. Mr Langmead later served in Norway. When British forces were evacuated from Norway, he returned to this country and spent some time with an anti-aircraft duty in Kent. The couple were married in June 1941, in Exeter, and within weeks he was sent to Burma, where he served for the remainder of the war.

Mr Langmead was a regular churchgoer and served on the Cockington-with-Chelston Parochial Church Council. He was a churchwarden at St Matthews Church. Mr and Mrs Langmead have two daughters, Sylvia and Marion, five grandchildren and five great-grandchildren, with a sixth on the way. Daughter Sylvia said her father enjoyed a full life well into his 80s when, inevitably, his pace slowed.

“My father was a man of integrity and a true Torbay gentleman who will be sadly missed by everyone who knew him” said Sylvia.

Mr Langmead’s funeral took place yesterday at Christchurch in Ellacombe where he had been a boy chorister more than 80 years ago, followed by a burial service at Torquay Cemetery.

Goodness and mercy all my life, shall surely follow me

July 18, 2012 1 comment

It was my Grandad’s funeral today. At 1pm sharp we walked into the Church where he sang as a boy. The 1pm sharp bit was quite lovely, Grandad was a man of orderliness, you could set your watch by the time him and my Gran sat down for dinner, at 1pm every day. Today it was not a Granny dinner that called us together, but a celebration of Grandad’s life. The Church was busy and lots of people hang around for refreshments afterwards once we’d been up for the burial.

The chat beforehand was that they’d be ‘no piping the eyes today’, a stiff upper lip was attempted by all but managed by few. It wasn’t so much the loss of my Grandad that hurt, he was a lovely man who’d had a full and fabulous life, but seeing my Gran follow his coffin out the Church was lip quivering for the best of us. They met in the Church youth club 80 years ago and had celebrated their 71st Wedding Anniversary last month. The other thought I couldn’t shake, and haven’t been able to shake for the last few weeks, is that this really was some sort of dress rehearsal for Dad. He was joking with the undertaker at the graveside and promised to avoid fat ladies singing for the near future. Here’s hoping.

Goodness and mercy all my life, shall surely follow me. And in God’s house for evermore my dwelling-place shall be.

A true Torquay gentleman

July 9, 2012 2 comments

Albert William Langmead, JP

Died Sunday 8 July 2012 at Torbay Hospital aged 94 years.

Devoted husband for 71 years. A loving father, grandfather and great-grandfather.

A true Torquay gentleman who will be sadly missed by all who loved and knew him.

Share a moment, hold a hand

July 8, 2012 13 comments

My loving, caring, stoic grandfather is dying. He has been in hospital for weeks since breaking his second hip of 2012, his recovery took a turn for the worse a couple weeks ago and he was transferred back to the main hospital from the community hospital he had been in.

This week there was a change and it became clear that he was deteriorating and would soon die. He is 94 years young and as my Gran was telling me last night, ‘at our age your body parts are just very tired and eventually stop working’.

Yesterday afternoon I had the privilege of sitting with Grandad for a couple hours. He has never been a particularly tactile person but we sat in (mostly) silence and held hands. He woke up shortly after my Mum left to go home and greeted me by name, so I know he knew I was there. While he was resting, I was reflecting on my life. I realised I don’t often stop for a prolonged period and just think, about me.

There is something about sitting with someone at the end of their life that makes you consider the richness and balance of your own. More on that another time. I think I will treasure those two hours for years to come. I’m not sure whether they will be as profound in the long run as they feel they could be now, but I am very, very grateful for having had the opportunity to sit and hold Grandad’s hand.

20120708-064449.jpg

As I drove home May the Kindness by Jackie Oates was next up on my CD player, I’ve never really listened to the lyrics before but I found them quite poignant.

So share a moment, hold a hand
Wipe the tears, understand
Life is borrowed we contour
Speed and light and bring your spirit home

May the kindness, that starts with you
Turn full circle, when it’s due
And the flame, that burns your heart
Burn with love, and hold us now we part

I am grateful for every moment I’ve shared with my Grandad, particularly those yesterday afternoon.

Follow

Get every new post delivered to your Inbox.

Join 120 other followers

%d bloggers like this: