Is he dying?  We just don’t know yet….

This is a true story; use it as a case study, a reflection for your practice or refer to it as a discussion document – whatever you want to call it.  It’s long, and it is to be continued – so read it in parts.

It is about Integration of healthcare, not tech or Digital, although there are many opportunities where this could have improved communication and assessment.

It is intended to share an experience, to educate but more importantly to ask questions; of system leaders, of professionals and of families who are supporting their older relatives as they receive healthcare from either Primary, Secondary or Community services. It is not intended to criticise, but if you spot things that could have been done differently and you could influence this, then go ahead.

Part 1 – Introduction

This is the story of a patient with cancer and a long history of back pain, his family and their interactions with some of the health care system on that journey. You may wonder if the question is a strange one for a Title, but how do you answer – Is he dying? 

We are all dying and as we reach our older years, the question may get asked more frequently, depending on the circumstances, illness and prognosis.  In fact, in the NHS we actively promote and plan end of life conversations at an early stage and this approach is encouraged by carers and other advocate groups.  But it’s such a difficult thing to time it right and to ask the question of others.  Perhaps, Is he dying? is answered with a different response each time it’s asked, because each person asking it may have a different reason for asking. Or perhaps because the context has changed.  If it’s the person (patient) themselves, we have to judge why they want to know and how the reply will affect them.  The circumstances change between temporary, progressive and permanent.  Health and Care is willingly provided at the point of delivery; yet it is sometimes planned in accordance with fixed criteria, which can be more restrictive than just following guidance.  Is this what we expect as patients and how we want our healthcare to be delivered?  These things are fluid, but the system struggles to respond at the right time or with the right care.  For those of you currently planning Integrated care – this story might help your thinking. 

The story

Questions and responses

The Family

If difficult and sensitive questions are being asked by the family, there will be multiple reasons for asking.  Primarily, it’s a desire for their loved one to be removed from any current pain and suffering, but it’s also to make plans as they may live and work away.  They may wish to be present or at least try to provide or arrange the right support when needed. They want to know what is happening as much as the person themselves, probably more, so that they can help to navigate a very complex system.

The Consultant’s response

If the Consultant has a terminal diagnosis to give, what are they thinking when they reply? Do they know the patient or have they never met before?  Have they been asked to pass on news of investigations arranged by another professional or team? Just what is their remit and how do they know what others have communicated or will communicate?

It’s early in the story, but I’m starting here as its as good a place as any.  Bear with me as I weave back and forwards in time.

Here are two statements delivered on the same day in November 2018, independently from two Consultants to one patient and his daughter, about the same set of investigations and a plan for care.  One Consultant had met the patient before,  the other had not. However, they had both been asked to report, following acute investigations requested by the patient’s GP.

  1. Urologist – ‘You have cancer, you are too old to operate on and it’s likely that you would die on the operating table. We will not be changing our management plan’ – that brutally honest statement was absolutely not expected, but that how it’s was delivered none the less.  

A long stare and pause of silence ensued from the patient and his daughter, both wondering who would speak first or what to say next.  If this had been the first outpatient appointment of the day, would the next part of the journey have taken a different course?

Only 2hrs earlier that day in a different hospital 5miles away  (but provided by the same Trust), another Consultant had delivered part of the same story but with a different emphasis (both Consultants had attended a Multi Disciplinary Team -MDT that had agreed the management plan 3 weeks earlier)

2. Oncologist –  ‘Well the scan showed an abnormality in the Ureter; it also showed abnormality in your Bladder, we’ll give you some different medication, a further blast of radiotherapy and see if it helps to control the symptoms (to stop the blood in the urine and reduce the leg swelling)’.  

No mention of this being secondary cancer from primary prostate cancer diagnosed in 2010.  Much gentler and yes, delivered as continuation of ongoing care over 8 years, but the response didn’t really disclose what the problem was.  So, which was better in terms of the opening question?

Did this patient really need to see two separate Consultants to receive information about a diagnosis and planned care for the same problem and symptoms?  Why does the hospital system continue to treat people functionally by Speciality rather than once?

On the basis of the first outpatient appointment earlier that day, the patient went ahead and consented to 5 consecutive days of radiotherapy treatment and at age 84, endured the daily 80mile round trip to nearest Radiotherapy service.  All went reasonably smoothly apart from a strange reaction on day 4, resulting in a 999 call, A&E attendance for extreme rigours and discharge 5 hours later.   

The Oncologist had said to follow up in 6 weeks, a patient information leaflet was provided for a drug that was never prescribed. A blood sample form also completed and given to the patient for a PSA Blood sample that hasn’t been taken.  The patient’s daughter made notes on the outpatient appointment letters.  This felt like active treatment, and hence agreement to proceed. Should there have been more honesty from the Oncologist regarding prognosis and opportunity to reflect before asking for consent to radiotherapy?  As it turned out, the result of the radiotherapy was a positive one and it did ease some of the symptoms.

Regarding the new drug that never arrived, who’s responsibility is it to ask for this medicine if it doesn’t arrive?  How long is reasonable to wait? What happens after an outpatient appointment to ensure that prescriptions are issued and that the patient has started any new medication as prescribed by a consultant?

Eight weeks later following further deterioration, the family find out that the ‘abnormality’ is now described as a ‘pelvic mass’ (actual size still to be written down and shared, other than word ‘large’ and ‘obstructive’ in the MDT notes which would eventually follow).  If the patient had known this, would he have consented to the radiotherapy?  Would there have been a different conversation with the family?  He was quite hopeful at that time, because although he suspected it was a secondary cancer, its size and stage wasn’t known/shared and the option of ‘no treatment’ wasn’t really explored.

Part 2 – Benefit vs burden 

How can a patient make rational, pragmatic decisions about treatment options, when they don’t know their prognosis, any likely symptoms or intended benefits?  If a patient (or indeed their treating clinicians) don’t know exactly what’s wrong, or how long the disease might take to progress, or what the side effects of the various concoction of meds will deliver, how can they be advised and the right choices be made? Is it ok to say we don’t know and we are all unclear?

And if a patient doesn’t ask, how much detail should be withheld by health care professionals?  Just what is known presently, or what may (or may not) happen in future?  Also, when facts at various stages are known, how does sharing this impact on a patient’s ability to deal with the facts?  We all need hope but giving someone bad news at the wrong time can remove this entirely.  When though, does this hope become futile and the symptoms and consequences of our actions outweigh the continual search for treatment and who should guide this balancing act?  

Communication between The players

We place ourselves in the hands of multiple health care professionals, whose communication, approach and intentions vary in terms of considering the whole patient – the holy grail of a holistic approach.  The issue is how to communicate across the sectors and specialisms, in coded datasets that enable electronic sharing between organisations, but also to create a plan to inform the patient and their family. This also needs careful consideration of use of language as we move to more open sharing and transparency with patients.

Different models of care

Crudely, with no offence intended, as clearly there is much more to the interactions than is about to be suggested;

  • The Medical model – how can I help, try these tablets or treatments and come back if things don’t improve, we’ll arrange further investigations.
  • The Therapy model – whats the problem, do these exercises or use this equipment/appliance and go see your GP if they don’t work.
  • The Nursing model – I have been asked to complete some tasks,  assess and give advice; blood taking, eat, drink, move, clean, sleep – maybe a referral to the many specialist support services – continence, mobility, nutrition, podiatry, physio, OT etc.    

We hear mention of MDTs, but how are each of these models truly connected and how does the communication and coordination work? How does each professional who specialises in one area or another convey their skill and knowledge, guide their colleagues and create something individual for the patient?  

Even if the patient is the central point of contact, are they really expected to recount multiple times their understanding of events?  They are only involved in some of the discussion.  Even with the benefit of a limited shared record – history taking still forms a huge part of every contact and this repetition is tiresome for people when they are unwell or cant recollect a complex history.

So back to the case study, 

The Urologist – knows that surgery is risky, prognosis isn’t good and shares this message dispassionately with the patient in a transactional way – they won’t see this person again.

The Oncologist – has been treating the patient for 8 years so has seen the progression from Prostate to Bladder cancer.  Various ‘special medicines’ have been tried over the years to manage the cancer, some have produced horrendous side effects which were not reported back. This is because the patient wasn’t aware that they were side effects; why would he think that any medicine prescribed by the Doctor could possibly be the cause of feeling so wretched?  The patient didn’t know the hot flushes, incontinence, nausea, confusion or extreme lethargy were potentially unnecessary side effects. He assumed it was his illness and was just part of dying so never reported them back to the Consultant – he didn’t even know they were medicines prescribed by the Consultant.  He did describe to his GP on many occasions’ feelings of extreme lethargy and somewhere along the line ‘Dumping syndrome’ was mentioned – to be added to the lexicon and complexity of the symptoms and possible diagnosis over the years.

The GPs – try various pain control medication but are often at the limit of what can be safely prescribed in General Practice and are balancing these pain relief drugs with the risk of further falls, with potential digestive complications, drowsiness and other medication contraindications.  They try to tie it all together and refer to a variety of specialist services for help.  

The Parkinson’s Specialist – as part of trying to work out what was going on, they assess the deterioration in speech, speed of thought, gait, writing etc.  They conclude, ‘I don’t think you have Parkinson’s I think it’s the cyproterone and bicalutamide that’s the problem – I’d recommend that you discuss not taking them’.  Medication leaflets are read, the GP agrees, it wasn’t something they were familiar with either, but the Oncologist had prescribed to slow the progress of his prostate cancer. Was the benefit of the drugs greater than the burden of the side effects? How was this information eventually passed back to the Oncologist?

They family discuss what’s important to him in terms in terms of longevity vs quality of life and the patient chooses to stop taking the two medicines as recommended.  There is almost an immediate benefit and a return to a former life; driving, helping others, participating and enjoying living in his new Supported Independent Accommodation.  The prostate has behaved and been managed all this time – its been the back pain that has been the focus.  He fell backwards onto concrete 7 years ago, playing cricket with his Grandson.  He has been on Tramadol & paracetamol since, then after another fall suffering pelvic & rib fracture (? induced by strong pain relief) he was switched to Morphine. What has been the effect of these long term strong pain relief medicines and had they contributed to the demise?  Again, the balance is required because living with the pain was intolerable.  However, until 2 years ago, he had tolerated the pain with these medicines. He used to swim 40 lengths twice a week and attend a gym twice weekly too. He has been a fit and active man all of his adult life and regularly reported this. He was over 80 though and at what point do we start to be influenced by thoughts of natural ageing?

Then it all started to deteriorate.   Did the loss of his close cousin who he had cared for since losing his wife and the subsequent grief and bereavement also play a part?

Part 3 – Alternatives to the drugs 

The Physiotherapists (2 different services; Older Adults and Persistent Physical Pain) – they ask about activities of daily living and give a range of exercises to keep the muscles supple and maintain good balance to prevent further falls – ‘move it or lose it’ they say.  He jokes ‘I come in here on two sticks, shuffling along and can hardly stand and they give me more bloody exercises’.  He can’t wait to get back into his chair with his heated wheat bag where it’s comfortable.  He remains supple in this position but is ill when the invitation to group pain therapy comes so he declines; he is discharged from the service as he didn’t make contact to join the next session.

The Reablement team – another OT assessment, a different Physio Assessment, Care (if required) and a District Nurse arrive to carry out further assessments.  They are part of the same Community Provider as the Physios, with the same clinical system.  Surely he doesn’t need more assessing? But someone comes and watches him walk up and down the corridor to the dining room once a fortnight, with two sticks or a Zimmer frame.  Getting to the dining table independently is an unwritten condition of his residency in his Supported Living Accommodation.  He knows it’s important as he wants to remain there, so makes this a priority. But the intervention from the Reablement team was sporadic, without any plan known to him (or one that he would follow).  He may even have said don’t bother coming anymore because he doesn’t feel any benefit, ‘She just watches and follows me down the corridor’ he says.  

August – a bad month

He takes to his bed with a Urine infection and deep depression follows so he’s ‘discharged’ from the Reablement team.  He just wants to die, so he’s ‘referred’ to the District Nurse team for End of Life Care; skin integrity and pressure sore checks, continence assessment, nutrition, state of mood etc. His family are annoyed and confused at the language of ‘discharge and referral’ and the resulting delay in switching teams.  Are they not all part of the same Community team?  Why are they changing teams now at this difficult stage?  There is a ‘Hub’ to coordinate all of this and the Nurse apologises that she can’t do the pressure care/skin integrity assessment because this now done by a different team.  Should the family be encouraged to speak directly with ‘the Hub’ and give the background information to save further assessments? Although he has capacity – he’s fed up with it and and gives partial information from what he can recall.

Nevertheless, he undergoes a full Nursing assessment (again from people with access to the same clinical system).  There is a volume of pages of handwritten notes and assessments with stickers on in the Purple folder. There is more blanks though than detail as they have only been written in twice since August.  His family read them and add notes on sticky labels to share updates, but there is no evidence of them being read or care changed as a result.   Should families be encouraged to add to these records? Who do these notes belong to and what is there purpose? Are they duplicated in the clinical system and so wasting precious nursing time? Or are they for families to know what is happening? Would it be helpful if they also contained future planned visits? Then family could be present too.  But maybe that’s not always helpful?  The GP doesn’t add anything but leaves notes in his diary for the nurses and the family.

Different faces

He is visited by so many different people that they all merge into one.  His days are remarkably similar as he cant get out now and he doesn’t recall their names, they all seem to be called ‘Joanna or something’ (none of them are but that name has stuck).  They don’t seem to explain their purpose or tell him which service they are from – or if they do, he doesn’t recall and cant relay this information.  His family ask for everything to be written in the diary, so they all know who’s been and who to contact to find out the plan– but only the lady that does this is his cleaning and shopping helper, none of the professionals seem to have time or maybe because its not an official document they don’t appreciate the help this gives the family. 

Fortunately, all anticipatory ‘Death plans’ had been sensitively and fully discussed and documented with his Care Coordinator and GP in July when he was mobile, well and had clarity of thought. He also had hope that this wouldn’t be needed until sometime well into the future.  

But things had deteriorated rapidly so his GP now has the ‘preferred place of care’ chat.  He is placed on the Gold Standard Framework for Palliative care – yellow is entered in his records – weeks to live, but the family aren’t explicitly told this, although many nuanced conversations were had at the time and they all accept that it’s still unclear.  He has access to and shares his medical record so that they can all help with the coordination of care due to the multiple professionals involved, and this is where they see this information.   If he’s had any conversations with the GP about his prognosis, he doesn’t share this with his family, so they don’t discuss this entry with him either. 

‘Just in Case’ medications are prescribed and hidden in the cupboard, so that he doesn’t take them by mistake or is aware they are preparing for his end.  The family watch and wait and all rearrange their lives to be with him.  He stays in bed for three weeks, his mobility deteriorates, he becomes incontinent, he’s still in pain and the increased morphine is making him so sleepy and depressed, so the Specialist Palliative Care Nurse is called and visits.  

After a chat (not referred to as an assessment) she concludes, ‘Well, you don’t look like a dying man to me, I think this is acute back pain with depression, not cancer pain, would you be able to get to hospital to see a pain specialist?’  He replies, ‘Yes, I’ll try if you think there is hope’.  He rallies and although very wobbly, gets up next day, makes a big effort, has a shower, tries to eat.   Gradually, over three more weeks, he gets mobile again and makes his hospital appointment.  They all joke that he is Lazarus.  His family ride the upturn on the roller coaster and change their mindset back to hope.  They also have an element of professional embarrassment with their employers as he’s no longer dying and they return to work after taking some time off to be with him at what they thought was approaching the end of his life. 

September – The Pain specialist 

Six injections are given for the enduring back pain, resulting from the fall 7 years ago and really the root cause of all of the acute pain since.  He says, ‘if this fixes me, I will be both delighted and annoyed that I have lived with this all this time.’  A couple of weeks relief follow then the pain returns.  He has a follow up planned for 3 months but doesn’t make it because he’s unwell again.

Everyone carries on, trying to tempt with food that he no longer really enjoys, his teeth have decayed because he stopped brushing when he thought he was dying.  He eats only food heavily laden with sugar as nothing tastes the same or interests him – is this the drugs again?  On the positive note, he’s now considered ‘mobile and not housebound’ so the DNs stop visiting; he’s discharged from the Palliative Care Nurse caseload and he’s expected to visit his GP if poorly again.  Maybe this is why the records have no entries?  Should he have been discharged from everyone’s care though as someone who clearly is in receipt of palliative care?

He decides to drive again so the car in put back on the road and he agrees only to drive in daylight, from A to B, where he knows the roads and there is limited other traffc.  Tense and emotional family conversations are held about his safety and that of others, discussions also with the GP who suggests a Driving Assessment. They know he wont do that, but who takes away the permission to drive and remove his last hope of independence?  It’s another very difficult balance.  

Part 4 – The final progression of illness

October – His leg starts to swell.  His GP sends him for a scan – is it a Deep Vein Thrombosis?  A very thorough and proactive Advanced Nurse Practitioner arranges every investigation required to get to the bottom of the problem.  2 Ultrasound scans and an MRI scan later and that’s when the pelvic mass is discovered, but still not shared with him.  Its carefully described as a ‘soft tissue swelling’ but it’s not the Ambulatory Care team’s job to pass on the bad news, or is it?  They tell him that contact has been made with his GP, the Urology and Oncology teams and that he will be invited to an appointment in 2 weeks’ time.  The appointment takes almost 4 weeks and after many phone calls, the family receive the response, ‘we won’t be changing the management plan so it’s fine to wait the 4 weeks.  And now we’ve come full circle to the outpatient appointments at the start of the story.  

The leg swelling is secondary lymphedema due to pressure on the lymph nodes in the Pelvic region.  The District Nurses are called again and visit.  They kindly measure his leg under the table whilst he’s eating his lunch so as not to disturb him.  A garment is ordered but the prescription doesn’t make it to the surgery and needs chasing by the family and the Lymphedema Nurse. Two new stockings take over 6 weeks to arrive – they are specially manufactured and come from Germany.  He chuckles at this as he was an Engineer and worked in Germany at one point. 

Back to The Big Question

Throughout this journey, everyone is asking ‘Is he Dying?’

Someone from the Sheltered Housing Accommodation asks – ‘he may not be able to stay in this accommodation if he is – he needs to remain Independent’.  We don’t know if he is dying but it’s his home so he’s staying here for now. 

‘Does he want to know what’s wrong’, asks the GP. How can the family answer that one?  Unless someone actually says what the problem is and whats likely to happen, how can they answer on his behalf?  

On one GP visit in November, his daughter-in-law happens to be using FaceTime to chat with him when the GP arrives to prepare him for the news at the forthcoming Urology appointment.  They agree to a 3 way video call which is helpful.  Although its his usual GP who has already had the ‘death chat’, she is cautious in her conversation this time.  She knows him well and is trying to assess what he does and doesn’t know, so as not to lower his mood and him end up back in bed in despair. It’s clear today that he doesn’t want to enquire.  The daughter-in-law keeps quiet.  The GP judges that he doesn’t want to know the results of the investigations so has a separate call later with his daughter-in-law to explain.  

Some days he does want to know and talk about death, other days he doesn’t, and it depends who will hear the answer. If it’s his daughter, then no – he doesn’t really want her to know.  She’s still his little girl and he still wants to protect her; he tries to avoid her having to travel long distances to visit but she is in constant contact, trying to help with limited information.  He doesn’t care what his daughter-in-law knows, she lives locally and they have a very trusting relationship where she has helped to navigate this complex system for him for many years.  He gave permission for this whilst he and his wife were becoming frailer in 2012.   He often says, ‘there are no secrets between us’ and ‘thank god she can remember the answers’ to the many repeated questions that he is asked.  But she asks lots of questions, of him and of others which occasionally gets on his nerves.  He wishes she’d stop asking and shut up. Sometimes they gently disagree over the detail, the timeframe, the sequence and the effect.  At other times he shares his darkest thoughts with her and she doesn’t know whether to share these or not with the professionals looking after him.  He reflects, ‘how can an older person with a history so complex be expected to recount the details? So he makes long lists of events to help the next time he is asked and she isn’t there.  

Part 5 – Another year dawns

January, the leg is really becoming a problem, its painful and impeding mobility.  He tries to go out and fails, needing to be brought back to his room in a wheelchair. His family are away on holiday and the Housekeeper calls the GP who removes some of his heart medications and adds in a diuretic and an antidepressant to increase appetite as well as improve his mood.  But nobody collects the prescription so he doesn’t start until the family get back from holiday four days later.  The Lymphedema nurse helps and the stocking is put on, but he experiences more pain.  He’s convinced it’s the stocking so won’t wear it again. The second brand new one that came from Germany sits in the top drawer, unopened.   It’s the same conversation, benefits vs burden.  The GP, the Lymphedema nurse, the Specialist Palliative nurse and daughter-in-law meet to discuss priorities.  

  1. Sort pain
  2. Deal with continence
  3. Reduce oedema 
  4. Make comfortable without just making him sleep.  

Between them, they have a plan, change meds, try to sort out temporary continence products (which never arrive) but the problem rights itself after a couple of difficult days.  They swap mobile numbers to aid swift communication when needed.

The accidental Overdose

Morphine is removed and replaced by Oxycodone.  He is fully involved in the discussions, his grandson present too for extra memory power.  He has the capacity to understand and was helped to take the right dose and quantity of the new medicines. But after the family leave that evening, he ends up taking two lots of his long acting tablets (he picks up the wrong box and had forgotten that he’d already taken his evening dose) and swigs about twenty times the dose of short acting oral liquid from the bottle – the syringes too much of a faff for him (nobody knows if he was in pain) and then falls that evening.  His extra intake of medicines – by choice, confusion or forgetfulness – who knows?  He lays for a while on the floor, he’s not hurt and needs to compose himself and work out why he fell. He doesn’t press his care alarm but finally manages to get into bed then rings his family to say he’s ok, but can they visit first thing.  They go over anyway and he’s fine but tired.  He recounts this later as a stumble, ‘not a fall’.  

The next day, he’s a delight and very happy!!  Entertaining the rest of the residents, regaling with jokes, whistling Christmas carols and providing renditions of Any Dream will do… he’s back to his old self and it’s lovely.  Pain, well of course its reduced.  Mobility, he’ll have a go at anything.  His specialist Palliative Care nurse decides that although accidental, at least his pain is now managed and increased the initially prescribed dose.  The following day he’s on a downer again, he feels dreadful and does not want to eat any more.  He wants to get off this earth.  He stops eating again and goes on hunger strike.  He makes this decision with clarity of thought and with will power that is to be witnessed to be believed.

Finally, the honest conversations take place; he is considered to be at the ‘End of Life’ and ‘fast tracked’ for nursing care.  He wants to remain in his own home and the Sheltered Accommodation Organsisers agree to this willingly – he’s part of their family now too.

And so the roller coaster continues………..

Conclusion

Well, we aren’t really there yet and the story will continue to unfold to the end.  However, there is sufficient reading in here for anyone to think about planning and doing some of this ‘Community and End of Life care’ differently. 

I urge anyone with senior system leadership responsibility to consider the interdependencies between the independently managed services and make improvements, however small.  Please do use this case study and pick out the ‘pain points’ in the journey and strive to make it better for the next complex patient.