Tag Archives: Death

Pain – managing it for someone else

5 Oct

 

Pain – managing it for someone else.

 

See a loved one in pain, especially if they are having difficulty explaining their pain is really hard to watch.  You can look at their broken body and be sure that they are in pain – they just must be – you only have to think about their injuries!  But pain can be a personal thing, some people are far more stoic than others.

 

So if your loved one cannot explain in words their pain, how do you know?  Do they flinch or grimace?  Are there any changes?  Does something affect their response?  Do they shift their position?  And what can be done to help them?

 

Firstly, contact their doctor to discuss pain medication.  How pain is usually clinically managed, which is to prevent over sedation is to climb up a “pain ladder”, so pain relief is estimated and then generally started at a low level.  Pain relief can also be given regularly or on an “as required” basis for “breakthrough” pain.  So you can have constant pain relief or just when it gets really bad or a combination of both.

 

So having been given pain relief for a few days, to see how they get on, the loved one should be under constant monitoring to find out if this level of pain relief is enough.  So are they still grimacing?  Do they display shifting movement?  Do they look like they are unhappy or hot or cold?  Even when very sleepy and non-communicative, people tend to shift their bodies about rather than lying in a relaxed manner.  And again, if it is safe to lightly touch them somewhere, see how they respond to being touched, they might appreciate the comfort of human touch and you can then feel through your hand any flinching or shift in their body as well as visually observing it.

 

If they are still in pain, then generally pain relief is increased about 20% per rung of the “ladder” and as the pain relief goes up, the person can become more sedated.  The end stage of some diseases are very painful and so pain relief increases and they become more sedated, eating and drinking less, until their body finally shuts down potentially from both the underlying disease and / or lack of hydration and nutrition.  As pain relief increases there is a really careful balance when the person is really poorly, as too much pain relief or too big an increase can trip over the line of providing comfort into assisted dying.  Assisted dying in the UK is illegal, as it is in many other countries and the healthcare professionals are very cautious in this area of care to stay within the bounds of legality.

 

This balance at the end of life is really important, if someone is dying a painful death, then they should be provided relief from that pain and sadly the pain relief can make them more sleepy and in truth, this could to bring about their death more quickly than without it, but no-one should die in agonising pain!  What the professionals cannot do is actively take steps to expedite death, just make it more comfortable.

 

And for the carers watching it, it is an awful experience.  Just awful!

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Caring for someone with a dementia

3 Aug

 

Caring for someone with a dementia

 

There are lots of different kinds of dementia and they have slightly different presentations, but the key points about all dementias is that they are changes to the brain, that affect memory and brain function, that is deteriorating.  There can be changes in personality and the deterioration might not seem to make sense, as someone can still retain one key skill long after they have lost other key skills, it doesn’t always work that the person with dementia loses everything at a nice even pace!  And importantly, eventually it will be terminal.

 

It is useful to get a diagnosis of the kind of dementia that the person has, as it will help the carer to understand some of the changes that will happen.  Diagnosis is also a gateway to access some services, that will support both the person with dementia and/or their carer.  And making sure that the carer is supported is really important, as without the carer their life would be much more impaired and disempowered.  The carer will facilitate the best outcome that can be achieved.  In the UK dementia costs £26bn a year, the biggest part of that figure is made up of the work of unpaid carers, £11bn, and the NHS and social services make use of that unpaid care, which means supporting the carer to ensure that carers can keep going.

 

There is no cure for dementia, there is a lot of worldwide work being done currently looking at different cures, creating new drugs and repurposing existing ones and although there have been some promising initial results, I have been told that a cure is a least 10 years away, if not more.

 

Because there is no cure, the only therapies are those that keep the person in the state that they are in, but do not roll back the clock on the progression of the illness.  These drugs only work for a certain period of time, as they will not stop the underlying progression of the illness, but will maximise the cognitive abilities that they have.

 

The other therapies that are useful are the social interactions, as long as they are meaningful and there is a lot of work being done on these.  Music seems to be quite powerful to many people.  Football dementia cafés are great for football fans and here in Plymouth we are lucky enough to have a dementia café for veterans.  Elsewhere there are dementia farms, which for former farm workers is incredibly powerful that they are once again able to participate in the workings of a real farm.  When the idea was first mentioned there was concern about the risk, but the risk is managed and the participants get a lot of value from it.

 

Carers need support and respite, they need to be able to have a life of some kind away from their caring role, for an hour, a day or a week. Family carers do an amazing job to care for people with dementia and yet they are working alongside a progressing condition that is slowly taking their loved one away.  85% of carers are clinically depressed within a year of diagnosis, it is hard dealing with the condition and its progression.

 

A person with dementia can live a fulfilling life, they can be empowered to do the things that they want to for as long as they are able to.  It takes the carer and the understanding of a whole community to do it well.

 

If you need help caring for a loved one with dementia, let me know, I understand what it is like.

Suicide – The aftermath

20 Jul

 

Suicide – The aftermath

 

The politically correct way to discuss suicide is to describe it as “taking their life” as the phrase “committing suicide” refers back to the time when it was criminal and is therefore a shortened version of “committing the criminal offence of suicide”.  Taking your own life is not a criminal offence, aiding, abetting, counselling or procuring (ie helping or encouraging in any way) are all still are criminal.

 

Taking their own life, is the biggest killer of men under the age of 45 in the UK.

 

So when someone takes their life, the friends and family that are left behind are hit by the tragedy.  Before they took their life, options are possible, there are choices, even if that person doesn’t see them for themselves.  Afterwards, those options have gone.  And they are never coming back, so nothing will ever be the same again.

 

If someone attempt to take their life unsuccessfully, then the options are still possible and those around that person are on notice that they need help, even though they might not have asked for it.  It can entirely change the situation, as the person may have done serious harm to themselves in the attempt and their life is irrevocably changed by the new situation.  And the person, their family and healthcare professionals all must deal with the outcome and the new situation.

 

If someone is successful at taking their life, those who are left behind are firstly numb, then the questions start.  What could I have done differently?  What opportunities were missed?  And by whom?  And all whilst this is going on, there is sadness.  Sadness for the life that could have been.  And a sense of loss of the missed opportunities and lost life.

 

The family and friends will be bereaved and have stress to deal with and may well become depressed.  The families that I deal with when their loved ones took their own life really struggle, they are confused and their speech can get confused, it is all a sign of their stress and anguish.

 

When someone takes their own life, it is sad for the survivors, but they did it because they saw it as their only choice out of their pain.  It is not an easy decision, it is not the decision of what to eat for dinner or what colour shoes to wear.  It is a big important decision and it takes a lot in the moment to carry it out.  For the family who are left behind afterwards, you have my sympathy, living with the aftermath is very hard.

 

#MentalHealthMatters

 

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.

 

 

 

 

 

 

 

 

 

 

 

 

Caring for a dying relative

4 May

A coffin with a flower arrangement in a morgue

Caring for a dying relative

 

This is a very hard subject.  We don’t like to think about ourselves or our loved ones dying, but it is nevertheless an important subject.

 

If our loved one dies instantly, it is a huge shock, especially if we have not been expecting it.  If you have not had a conversation, then the next stage is commonly a state of shock before you can move into a more active mode of sorting out the arrangements.  This state of shock can last varying amounts of time, we are all different and how we deal with grief is different.

 

The death needs to be registered, the funeral arranged and then afterwards the estate can start to be sorted out.

 

If our loved one dies fairly quickly, this may give us an opportunity to say goodbye, to thank them for being in our lives and to let them know that they can go, if that is the right thing to say to them.  Saying thank you and goodbye is something we do for us, for them too of course, but letting them know that it is OK to go is something we do for them and a bit for us.  How we do that and whether we can do that will be different, sometimes we are not ready to let our loved ones go, especially if they are still young and we think that they have not finished their lives.  We can then have a little time to process the situation and try to emotionally deal with it.  And we cling to hope.

 

If our loved one dyes a lingering death, then we have that time to say thank you and goodbye and assure them that it is OK to go (assuming that it is).  We are upset and then process how we feel about it, however we cannot live on the adrenalin that this heightened state of anxiety will give us, so we get slightly used to it.  During this period of waiting, our loved one might rally, so we are given hope, perhaps only a glimmer or maybe a shining light, but we have hope.  And then they deteriorate and our hope dies.  If they have a fluctuating presentation, we can cycle through these emotions of despair and hope and we start living slightly on edge all the time, just waiting and not knowing.  This is very hard to watch as we see our loved one slowly slip away.

 

What happens if our loved one experiences a painful death?  Pain is something most of us fear.  We often wish we could trade places with a loved one in pain, but we can’t.  We can hold their hand, talk to them, feed them, play them music and lots of other things to try to comfort them and us, but we cannot take their pain.  Pain can be managed with drugs, but often it cannot be eliminated, watching a loved one in pain, whether or not they are dying is a horrible experience for both them and us.  I have been involved with many families when they are dealing with a loved one dying and a “peaceful” death is preferable, even though the death is often dreaded.

 

There is a finality with death, our relationship is forever changed, we can still love them, just not in person.  Death may be the time we stop and grieve, but if we are involved in sorting out their affairs, we may keep ourselves busy with that and not grieve and it is only when that is over that we do finally stop and grieve, which can come as a huge shock to anyone not expecting it, particularly since the death was some time before.  Greif takes time, but we can get over it and move on with our lives.

 

If during any of these stages we need help, friends and family may be around, but if we are faced with administration, legal or advocacy issues, I am here to help.  And I understand.

The Big Conversation – Dying Matters!

16 Feb

A coffin with a flower arrangement in a morgue

#TheBigConversation

 

There are a number of different organisations that are involved in this subject of talking about dying.  We live in a death phobic society, we rarely see real dead bodies, just fake ones in movies.  When a neighbour dies, they are not laid out in the dining room for the neighbourhood to come and pay their respects or anything like that anymore!  We avoid using the word “death”, there are lots of other sayings: “fallen off their perch”, “gone to the other side”, “passed on” etc.

 

And yet, this is something that eventually we will all do, yet we don’t talk about it much.  Lots of families find this a very difficult and uncomfortable conversation, but often once that first barrier is broken, of starting the conversation, the whole thing becomes much easier.

 

It is entirely understandable that people want to focus on living and therefore want to talk about living, about the exciting things they want to do with their life, the place they want to go on holiday this year or just what’s for dinner!  But it is still worth having a conversation, perhaps once a year or every other year about what you want to happen as you are dying and after you have died.

 

What sort of end of life treatment do you want?  Who will make those end of life decisions if you can’t?  What do you want to happen if you have a 50% chance of survival?  But what about a 70% survival chance or a 10% chance.  And what does “survival” really mean?  What is it about your life and lifestyle that is important to you?

 

And once you have died, what sort of funeral do you want?  Who do you want to be there?  Do any of these decisions matter or do you want your family to make some or all these decisions?  Is your family going to hold a wake, should there be a theme?  How do you want to be remembered?

 

In legal terms, this also leads into the making of a Will, which I have blogged about before.

 

Your family will be sad that you have died (hopefully) and one of the important ways that they are comforted in their grieving process is to be able to fulfil your wishes.  They can only do that if they know what your wishes are.  And they will only know what your wishes are if you have had a #BigConversation with them!

How to prepare for the future – part 2

7 Jul

Senior businessman showing a document

How to prepare for the future – part 2

 

Following on from the Big Conversation I spoke at in May 2016, it is important to take action on the things that were discussed.  This does not mean that your life becomes obsessed by your dying, as there is a risk that you will forget to live.  If you have one conversation a year with your family about it and all of the others tens / hundreds / thousands of conversations you have are about living, truly living, then this is likely to be enough for your family to know your wishes, as long as the one conversation has enough detail on your wishes.

 

So part 2 is all about creating Lasting Powers of Attorney (LPA), which will allow someone else to make decisions for you, if you need to have them made, when you are no longer able to do that for yourself.  There are two kinds, one dealing with finance and the other covering health and welfare, so I will take those in turn.

 

The Property and Financial Affairs LPA covers all financial assets that you own, not just the big stuff, but all the little stuff as well, such as your jewellery, photos, furniture and clothes.  It of course covers your money and house.  If you retain mental capacity, but become too physically frail to sort out your finances, then you can allow your attorneys to act for you.  During this time, their actions should be limited to your directions and they should not make their own decisions for you, they can do that when you lose capacity.  So it is worthwhile that if you have a particular view about your finances, that you tell your family.  Also the things that people row about is often the little things, such as a particular picture, piece of jewellery, chair or table!  So if you know where those things are to go, then make your wishes clear, it will save a lot of worry, hassle and conflict!

 

Also if you want to stay in your own home for example, if you become unwell, then let your attorneys know, have the conversation around the risks of you becoming unwell and not receiving 24 hour care, but 4 visits a day!  If you don’t mind going into care, then tell your attorneys the kind of home you want to go in to.

 

The Health and Welfare LPA can only be used once you have lost capacity to make your own decisions.  The generically important decisions tend to be end of life decisions and where you live, which means whether or not you go into care and if so, which care home you go into.  But it includes all medical decisions and all social care decisions, which includes what you wear, what you eat, what social activities you can participate in and as such have a huge impact on your life.  So if you have a view about any of these, then tell your attorneys.

 

Both kinds of LPAs need to be registered at the Office of the Public Guardian at a cost of £110 per LPA (subject to means tested exceptions) and registration can take 8-10 weeks depending on how busy the OPG are.