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Dying and Bereavement

26 Oct

 

Dying and bereavement

 

When a family member is terminally ill, everyone deals with that information in different ways, that includes the person themselves.  The Kubler-Ross model has 5 stages: Denial, Anger, Bargaining, Depression and finally Acceptance.  These stages can work for all parties involved.

 

Family members can therefore choose to be very involved or not at all and this difference of grieving process has an impact on family relations, at an already difficult time.

 

Some people are afraid of dying and don’t want to do it alone, they will hang onto life for as long as they can.  Others accept it and at the end willingly go there, rather than cling to life.  Some terminally ill people don’t want their family to witness their death, they consider it personal.  So for family’s who are on a 24 hour vigil, the 5 minutes in which they leave the bedside to have a comfort break will be the 5 minutes that person chooses to pass away.  Others want their family there, will white knuckle the hands of a loved one, rather than let go and feel alone.  Either situation has its emotional impact on all parties.

 

Some family members will communicate with the others that turn up and let them know that if there is anything they can do to help, they will, yet when asked, are always busy with something more important.  They just can’t deal with facing the situation.

 

Some family members want to be involved with everything, do as much as they can, which might be more than is required and might be an invasion of the privacy of the dying person.

 

So what is the answer?  There is no “one” answer and there is no “right” answer.  Everyone deals with death and grief in their own way.  It is important to remember that, however anyone else deals with it, they might not understand how you do and vice versa.  So just give everyone a bit of slack.

 

When in doubt, imagine yourself in a week, a year and a decade and do the thing that means that you won’t have regrets, whatever that is.  And whatever you choose, know that you are not the only person in the world that has felt that, grief is universal, even if you feel alone in the moment.

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Do Not Resuscitate – Completing a TEP

29 Jun

Do Not Resuscitate – Completing a TEP

 

Firstly, what on earth is a TEP?  Many of us will have heard of DNR orders, but have no idea what a TEP is, it stands for Treatment Escalation Plan and is the NHS document regarding end of life and resuscitation.

 

It has 3 sections; part A looks at whether this patient is at the end of their life with a poor prognosis and starts the question “Would you be surprised if this patient died within the next 6 – 12 months?”.  When I talked to healthcare professionals about death and dying, they will often say that they cannot predict when someone is going to die.  They can try and they will often get it right or close to being right, but not always.  People can unexpectedly rally and recover and continue to live for months or years.  I had a client who was Catholic and approximately annually the priest was called in the early hours of the morning to give her last rites and asked not to wait until office hours as she wouldn’t survive until then.  She finally succumbed in the 4th year, having survived last rites 3 times!

 

The next bit of section A looks at any advanced decisions that person made and whether they have the capacity to participate or make the decision themselves and if they haven’t, it allows the doctor to decide whether or not to resuscitate in the event of cardiorespiratory arrest.  In other words, is someone going to do CPR (chest compressions and restart their heart if it stops).

 

Part B then looks at a slower less dramatic decline and considers the circumstances “If the patient is currently very unwell or in the event their condition deteriorates”.  There is a series of boxes to tick Yes/No including some that are only relevant in hospital (aka acute setting).  The 5 questions for outside of hospital are:

  • Is admission to acute hospital appropriate?
  • Are IV fluids appropriate?
  • Are antibiotics appropriate?
  • Is artificial feeding appropriate?
  • Is De-activation of Implantable Cardioverter Defibrillator (ICD) appropriate?

 

TEPs are important documents, they are life and death decisions.  They are not however written in stone and can be changed by a doctor at any point in time that circumstances change.  And when circumstances change a new TEP is completed and placed in the patients notes.  Until it is changed, the current TEP will be followed by the healthcare professionals looking after that person, including doctors, nurses and paramedics.

 

I’ve seen lots of these completed, I’ve even been part of conversations around end of life in vague non-specific terms, but I’ve yet to see a doctor complete one in full consultation with the family, so they clearly understand what a tick in each of the boxes will mean.  It does have to be completed by a doctor, it is their signature on the form, but even when there is a health and welfare attorney with authority to make decisions about life sustaining treatment, the doctor still doesn’t fully consult with the attorney, or at least I’ve never yet seen that.  This means that they can get it wrong!  Not every family member wants to discuss this in detail and if they don’t that’s fine, that’s their choice.  But they should be given the option!

 

Part C is about organ donation, so is only relevant at the time when the other decisions are all over!

 

TEPs can be scary, they deal with circumstances that family members don’t want their loved ones to be in – very poorly!  If anyone needs support in dealing with a TEP or understanding it, then let me know.  I’ve been involved in others and I understand.

 

 

 

 

 

 

 

 

 

 

 

 

Carers feel alone

15 Sep

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Carers feel alone & bullied

 

In recent weeks, I’ve attended a couple of assessment meetings to advocate on behalf of a client, one of which was a PIP assessment and at the end the client is so happy that they want to hug me, not shake my hand!  I’ve always attended NHS Continuing Care assessments and Social Services assessments and always with good results.

 

With 2 clients expressly saying to me that shaking my hand is not enough, it struck me that there must be so many people out there feeling alone and out of their depth.

 

Sometimes when I’ve turned up at meetings, I can be greeted with something along the lines of “you don’t need a solicitor” or “the meeting will have the same outcome either way, this wasn’t necessary”, but the reality is that it is necessary and the outcome is not the same.  For starters, the person that I am advocating for doesn’t feel alone and nervous, they are more relaxed, as they have someone there on their side!

 

These meetings can discuss very personal issues, things that they don’t like to talk about with friends and family.  They don’t want to burden them with their issues or the keeping of their privacy, but they still want someone compassionate and understanding, who is not going to judge them.

 

Carers are amazing, they do a brilliant job of looking after people and if they all stopped, it would cost the UK billions (£11b for dementia alone in the UK).  They are often stressed because they are caring for a loved one, doing that is enough of a burden, they don’t need to feel isolated as well.

 

So if you are attending a meeting or know someone who is and want someone there on your side, give me a ring.  Love to help.

Appeals

22 Oct

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Appeals

If an assessment has been unsuccessful, then it may be worthwhile appealing.  There are 2 reasons for appeal, one is that the process has not been correctly followed and the other reason is that you disagree with the clinical decision.

The decision is made by scoring the 11 named domains and domain 12 (if used).  If the score is 1 priority, then funding should be granted.  This usually means that the person would be in hospital or a secure unit; it would be unusual for them to be in the community or in a mainstream care home.  If they score 2 severes, then funding again should be granted.  I have come across lots of people who have scored severe in respect of their cognition, but it is not very common at all to score the second severe.  Again therefore there are not many people who qualify in this automatic funding.

The other way that funding is granted is “with a number of highs and moderates”.  Then the CCG will look at the nature, complexity, intensity and unpredictability.  This is the route that the vast majority of people who obtain funding that I’ve been involved with get it.  The problem with this route is that it is very much up to interpretation.  Although the aim of the Department of Health is to have a nationally consistent decision making process, each CCG area does make slightly different decisions and therefore some CCG areas are granting funding to a proportionally larger group.

I generally don’t advise appealing a decision solely on the basis of a problem with the process, as if the clinical decision was denied, then once the process issue is resolved, the clinical decision will still stand and funding won’t be granted.  A complaint and an apology can work well to resolve these issues.

If there is a disagreement regarding the clinical decision, then the matter is worth appealing.  The first level of appeal is local resolution within the CCG.  This should be decision making, but not always, sometimes it is just a matter of explanation of the process, so before I go, I ask to make sure that it is decision making, I don’t want to sit there whilst someone explains NHS Continuing Care Funding to me!!.

The next step after local resolution is a CCG Panel meeting, so an entirely new group of people from the CCG should sit with the family & advocate and discuss the case, the needs of the person and what the differences of opinions are in the scoring.  The Panel meeting can be intimidating.  There is a Chair of the Panel, a representative of Social Services (hopefully) and someone from the CCG.  These 3 are the decision makers.  Therefore walking into a room with this many people when you are about to talk about a loved family member when they are unwell can be intimidating.  It is also an opportunity to talk about what has happened since the assessment meeting, which might shed more light on the situation, such as a situation at that time that was considered temporary at that time, may be permanent.

Once the matter has been finalised within the CCG the next level of appeal is to the Strategic Health Authority.  They also invoke a Panel process, as well as the chair, representative from a different CCG and representative from a different region by social services, there is usually someone taking minutes and a clinical advisor.  The process is slightly adversarial,  in that the CCG go through their process and often defend their decision and position, whilst the family are still trying to argue that their loved one should be eligible, giving clear reasons why they disagree.

If the decision is still unfavourable, then there is appeal to the Healthservice Ombudsman.  The Ombudsman will not make their own clinical decision and substitute it for the SHA or CCG’s decision.  They will look at the process and if they consider that the process has been reasonably followed, they will accept that the decision is reasonable, unless it is so clearly wrong that it would be considered unreasonable.  The Ombudsman is therefore a good place to tackle administrative issues along the way, but I have not found that route very helpful to tackle clinical decisions that I disagree with.

 

The Recommendation

15 Oct

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NHS Continuing Care Funding – The Recommendation

 

Having gone through the 11 named domains and the mop up clause of domain 12, the next part to consider is the recommendation.  As individuals or advocates, we are not involved in this part, it is for the Multi Disciplinary Team (MDT) to decide on the recommendation.  Their recommendation should be supported by the Panel unless there are clear and articulated reasons for going against their recommendation.  Those reasons must of course be fair and reasonable.

 

So how is the recommendation done?  The MDT must then, metaphorically speaking, piece the person back together, having taken them apart with the 12 domains.  The MDT then looks at the “Nature, Complexity, Intensity and Unpredictability” of the individual.

 

The advocate can discuss the recommendation with the MDT, but often the MDT won’t give a recommendation at the assessment meeting, sometimes because they are not recommending funding and don’t want to risk a confrontation in front of the family.  If they are recommending, then they might say it in front of family, but lack of discussion about their decision should not be taken as not recommending.  Sometimes they just need to go away, review their findings & think about it or possibly get some more evidence before they are able to make their minds up.

 

The nature of the needs is often about one or two conditions and the range of needs as a consequence.  So for example, dementia might be the condition and from that comes confusion, poor communication, poor risk assessment, poor continence etc.  Nature, unless it is an unusual condition is not usually the element that will be most important.

 

Complexity is often about how different elements of someone’s condition interact with each other.  So for example, if someone has poor mobility and therefore struggles to get up to go to the loo, they can end up with a UTI due to reluctance to drink.  The UTI, like chest infections, can set up a kind of toxicity in the body, which then leads to that person being overall physically and mentally very unwell during the period of the UTI (or chest infection).

 

Intensity is about a high level of need, this is often because that particular need has scored high or severe in the various domains.  It is about a lot of need, so someone underweight would need constant encouragement to eat.  Encouraging someone to eat is not necessarily a high skill task, but needs to be done many times during the day.  It could however require a high skill level such as specialised wound dressing of the skin, which needs regular changing.  It can take quite a while to do a complex dressing, which might need changing every few days, but not multiple times per day.

 

Unpredictability is what it means in normal language.  So if someone has a fluctuating health condition, then it would be unpredictable.  It could also be something that reoccurs regularly, like having lots of UTIs or chest infections.

 

It is hard to explain in simple terms why someone should be funded for Continuing Care and others aren’t, but it is about the persons needs being difficult to look after.  That doesn’t mean that the person has difficult behaviour (although they might have), it is that their healthcare condition/s are difficult to look after.  Someone with regular, but fluctuating aggressive behaviour might be difficult, but someone with a complex skin care regime would not be seen as difficult, just difficult to look after, they need a lot of time and skill.

 

I’ve found that the most important one of these is unpredictability and the least important is nature, with complexity and intensity someone in the middle.  But if the person is challenging to look after, then hopefully they will get a positive recommendation.

The Domains – Domain 12

8 Oct

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Domain 12

 

Domain 12 is the additional place to put something that has not already been covered by the first 11 domains (as there is no double scoring).  There is no information about what should be included and little guidance, as there is with the other domains.  It does however have to be a healthcare need and something that has not yet been covered by the other domains.

 

Mostly I find that people are covered well by the first 11 domains and often don’t score anything in Domain 12, but as with everything, there are exceptions.

 

The exceptions that I cover are addiction of some kind, but to the extent that is it a problem.  Which is when an unhealthy relationship with anything begins to affect the person’s ability to function day-to-day, then the unhealthy relationship becomes a dependency.

 

I’ve had a number of clients who were addicts (although I appreciate that this is outdated terminology and dependent is the preferred terminology).  I’ve had clients that had dependency on alcohol, tobacco and clients who were just looking for the next high, whatever it was, so if alcohol and tobacco were not available, then sex would do.  The care regime will try to manage their dependency, but this is something that they are encouraged with, rather than a therapy they have chosen in order to beat their dependency.

 

I also score excessive sleepiness in this domain, as it can become a barrier to intervention, so that, similar to a period of being unrousable, it is not possible to take food, drink or medication when asleep.  It is not uncommon that toward the end of life, someone becomes ever increasingly sleepy, so it is a question of whether or not that impact on the provision of care.  This sleepiness is something that they can be roused from, so is not an ASC, but just not easily roused and even when awake remain relatively sleepy, so if they are being fed for example, it will take a long time and they may have minimal appetite and would fall asleep again very quickly, possibly even part way through the meal!

 

I’ve also scored an overall generic frailty, which can happen with the very elderly or at the very end of life.  I’ve had a few clients in the 90s and 100s and they do appear to have this kind of fragility.  It can be hard to describe, other than generic frailty, but they often do seem very fragile, as if they could easily “break” (which I appreciate is not a great description).

 

I’ve also had a client with non aggressive cancer, which would need monitoring to make sure that it did not become aggressive, as the treatment regime for aggressive cancer would be very different from non aggressive cancer, so the monitoring is for the potential change.

 

The things that would not be included and scored in this domain are the things that don’t score for Continuing Care, such as the requirement for 24hour care or that they would be unable to live alone.

 

The scoring of this domain is also very hard in the absence of any guidance.  What I try to look at when scoring this domain is the skin and drug domains.  The low and moderate scoring in skin covers the risk of pressure damage, with low scoring when the monitoring is daily or less frequently, so monitoring of non aggressive cancer would be daily or weekly and would score low.  The skin domain for moderate is about the treatment or monitoring for pressure damage multiple times per day, so if the domain 12 issue requires basic treatment or monitoring multiple times per day then it would score moderate.  The drug domain for high is about skilled monitoring for side effect or fluctuations, so any domain 12 issue that required more than just basic monitoring or treatment multiple times a day, but was effective would score high and if it was not effective, would score severe.

 

This is a hard domain to deal with and the PCTs are often reluctant to accept anything in relation to this domain, but if there really is an issue that is not covered by the other domains, then I will make the point to have it scored in this domain, even if the MDT disagrees with it being included in domain 12, it will be brought to the attention of the Panel.

The Domains – Altered States of Consciousness (ASC)

1 Oct

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Domain 11 – Altered States of Consciousness (ASC)

 

This domain has an anomaly within it.  The National Framework says that the diagnosis of any one condition is not the reason to grant funding, but this domain has the priority level of coma.  So the diagnosis of coma will obtain the funding.  The only proviso to that is that the coma has to be ongoing.  I’ve had a few clients that have had issues that fall into this domain, but so far, they have been transitory, even if they have lasted for hours, their state of being in ASC still comes to an end.

 

So the key question to this domain is what is an “Altered State of Consciousness”?  It is about not being fully conscious.  It is commonly about having a fit, such as epilepsy or a stroke.  Fits and strokes have magnitudes of seriousness and therefore their side effects and consequences have magnitudes of seriousness.  But ASC can also be a state of not fully unconscious, but at the same time not fully conscious.  I’ve had clients that become “vague” and this is not a cognitive decline, this is for a short period and is different from their day to day presentation.  They often need to sit or lie down whilst this is happening.  It is about being in a state of mental and physical “being”,  where they cannot fully engage with the outside world.  They seem “awake”, but just not fully “there”, however when the ASC passes, their normal day to day presentation will return and they can engage with their environment in the way that they were able to do before.  I’ve also had clients who were “unrousable”, so asleep, but not able to be woken from that sleep and this can last for hours at a time.  The person is safe, in that they are tucked up in bed, comfortable and warm, but unsafe in that if they remain unrousable when they need medication or food, they cannot be woken to give it to them and this can have a detrimental effect on their wellbeing.

 

ASC can also be Transient Ischemic Attacks (TIAs).  A TIA is a mini stroke, it can be very fleeting and presents as though for a few seconds the individual becomes vague and then returns.  If they were on their own when it happened, it would be difficult to tell that it happened, other than their presentation may have changed as a result.  Like any stroke, there can be some brain damage, which will lead to an altered presentation going forward, as the individual will have lost some ability.  This is often seen as a “stepped decline”, where someone will plateau, then from one moment to the next change, then plateau again until the next change.  This is a common presentation with vascular dementia (as opposed to Alzheimer’s, which tends to be a straight line decline).

 

The next thing to consider is the frequency they are happening and very importantly, what is being done about it.  With for example TIAs, often there is little or no intervention, even if the carers do realise that something has happened, they just deal with the new presentation.  During or after the ASC there could be either a prompt and/or a skilled response to the situation, which may include an admission to hospital.  The prompt and/or skilled response does not have to include a trip to hospital, but might include a carer sitting with them one-to-one for a while; it may include a drug therapy or other additional support.  It is also about the risk of harm from the ASC, as some can have virtually no effects, such a very small TIA.  Then consider the frequency, are these occasions of ASC happening daily, weekly, monthly or yearly?

 

There is no severe scoring in this domain, but there is a priority, which as discussed includes coma.  The alternative priority score for ASC is something happening most days, that does not respond to treatment and there is a severe risk of harm.  I’ve never met a priority client yet, they should not have issues with funding, but should be cared for in specialist units in most likelihood – but I stand to be corrected.