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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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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.

Wills and succession for business owners

2 Feb

shutterstock_35222761 (229)

Wills in relation to business owners

 

If you are a sole trader, partner or director in a business, think about what if something serious happened to you and you died, what would you like to happen in respect of your business?

 

Some of the issues are the same as if something happened, but you are still alive.  Will the business continue?  How will it continue?  Is it to be sold?  Does it need to be sold to particular people or can it be sold on the open market?  How will the value be maximised?

 

The next thing to do is look at your business agreement and see what, if anything it says about those circumstances, as there may already be a clause covering those circumstances.  If there isn’t a clause or if you don’t like what it says, the next thing to do is talk to your partners / directors and discuss changing the agreement, if that is possible.

 

Think about the dynamics of the people who are left behind, do they get on and will they work together to achieve the outcome that you want?  Families often row and after the death of a family member can be a time when small niggles become full blown knock down fights!

 

You can put a clause in your Will in relation to any business assets that you own.  Wills are for individuals and the financial assets that they own at the date of their death.  You will need to consider whether the clause in your Will is going to work in relation to your business agreement.  You should think very carefully about who you appoint as your Executor and can they delegate the running of your business or will they run it themselves.  Are you essential for the business, so without you it will collapse?  Whatever the situation is currently, do you want that situation to be in place if you were to die tomorrow, if not, then you should consider what changes need to take place to ensure that your business is in a robust condition.

 

After you have gone, you need to think about how those who survive you will manage, such as, does your spouse / partner need the income from the business?

 

One very important step to take is to have a conversation with your family about what you want to happen.  They will always be upset, but it can be very helpful in their grieving process to know that they are fulfilling your wishes, but if they don’t know what your wishes are, they cannot fulfil them!

 

How to prepare for the future – part 4

4 Aug

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How to prepare for the future part 4

 

When I gave my talk at the #BigConversation, I discussed creating a Will, Powers of Attorney, having a discussion and then getting your paperwork in order.

 

Filing is usually no-one’s favourite job, but it is necessary.  It doesn’t matter what system for keeping your records in order, just as long as it is clear.

 

In your conversations with your family members, if you want, you can tell them as much as you like.  You can tell them how much money you have and where it all is held along with other information such as who your pension providers are etc.  The choice is entirely yours. If you choose not to tell them, then they will need to know where to find the information and therefore perhaps that is all you tell them.

 

It is useful to keep your paperwork in some kind of logical manner, so that when the person dealing with it (Executor or Attorney) finds it, they will be able to understand the picture of your finances fairly easily.  You may want to also have a file of obsolete paperwork, so that they can know what is no longer current, just in case they knew about it before, but mark it old obsolete paperwork, so that they will realise that!

 

It is not a good idea to leave your telephone banking and/or internet passwords with your paperwork, which is just for you.  If your Attorney or Executor needs to access your account, they can do that in their own right.  Using your access masquerades them as you and that is not how they are acting, you have given them authority in their own right.  That way their actions are traceable and they can be asked to be accountable for their actions.  The other issue is the risk associated with leaving your passwords around, as anyone could come along and access your account if they found it, so your are at risk of theft.

 

If you choose to leave your paperwork in a mess, then it takes hours to find everything, go through it, work out what is current and deal with it.  It might also include lots of wasted letters or it could mean that whoever is looking after you has to instigate an asset search.  Speaking from personal experience, when I have dealt with messy affairs, it takes hours and a lot of space on a very big table, it is frustrating and if the person has appointed a professional, will cost lots of money that it didn’t need to.

 

It may be boring, but get your paperwork in order, it will make life lots easier for you and for anyone helping you!

How to prepare for the future – part 3

21 Jul

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How to prepare for the future part 3

 

Having already said that you should make a Will and create Lasting Powers of Attorney, the next thing to do is sit down with your family and have that conversation about what you want in the future.

 

Lots of families find this hard, they don’t want to talk about that difficult stuff, when you might be unwell, dying or after you have died.  Usually once the first conversation takes place, it makes it easier for the next one to take place, as this can become a theme that you may come back to if things change in your life.  This does not mean that you will keep having this conversation all the time, it might only crop up rarely, but it is not something to shy away from.

 

Getting started can be hard, so the easiest way to start is to pick the most important topic to you, is it unwellness or death?  Then think about what that means for you and what is important to you about that subject, this can be the starting point.  Find out from your family how they think about it and what is important for them.  You may know exactly what music you want at your funeral for example, but if they would hate it and it would do nothing but upset them, then perhaps you might rethink or they might have to.

 

Having tackled one of these subjects, it will then make it easier to talk about the other one and what is important to you and them about it.

 

This conversation needs to be in a place where all parties feel safe to say how they feel.  And there can be no judgement; there are no right answers or wrong ones for that matter.  It maybe that this is particularly difficult and the conversation could elicit emotions you or they were not expecting, which may means tears or anger for example.

 

To get you started you can always find out if there is a death café near by and go along to that, so that you can get that conversation going.  There are many around, if you follow the #BigConversation.

 

Once you and your family have had this discussion, it will become a plan for what should happen when the worst happens.  You may not become ill, but everyone dies, so sooner or later this will happen to you and your family.  And it will be devastating for the survivors, which is as it should be.  But when that devastation hits, at least your family will know what to do, they will know what you want and following your plans and discussions will provide them with the comfort that they know they are doing what you discussed.  And before that happens, you have the comfort of know that this is what will happen.

 

The scars of bereavement take a while to heal, but knowing that you are doing what the deceased wanted goes a long way to helping those scars heal and the survivors move on and have loving positive memories of their relationship with you.