Five Wishes

Five Wishes is a way of listing some of the things you might want at the end of your life.  It is coordinated by Aging with Dignity, an American nonprofit organisation and has  become known as the “living will with heart and soul”.  It is reported to have helped literally millions of people plan for the quality of care at the end of life and was inspired by the work that Mother Teresa did with the dying. In the UK we would refer to this as an Advance Directive and Statement of Wishes.

Five Wishes encompasses personal, emotional and spiritual needs as well as medical ones and is legally accepted in many parts of the United States.  The organisers hold workshops to start this process although anyone can do it.  In the workshops they will advocate that you work in pencil to emphasise that these plans can be changed at any time before they are signed. Not forgetting that you can rewrite, change or revoke part or all of them after that if you’d like to.

Wish One identifies the person you want to make health care decisions for you if you can’t.  You may have already done this through a Lasting Power of Attorney (LPA) but it helps to have all these things in one place.  If you don’t have someone nominated then these decisions will be made by the medical staff who are required to act in your best interests.  They may talk to your next of kin but the final decision rests with the doctors.

Wish Two is to state what kinds of medical treatment you want or don’t want.  In the UK you cannot demand treatment but you can suggest what you prefer.  But you can absolutely say what you don’t want.  However be very careful not to have conflicting statements as by default doctors will choose the more aggressive option.  So if you say you don’t want any interventions, it will be confusing if you then say you want to be tube fed.

Wish Three is about how comfortable you want to be.  This can include things like warmth, light, music, hair brushing etc.

Wish Four is how you want people to treat you:  Would I like my hand held?  Would i like to be alone sometimes?  Do I want spiritual support? Would I like to be read to?  This could include who would treat you – would you be in a hospice or at home.

Wish Five is what you would want your loved ones to know.  This can be as profound as “I am not scared of dying” or as basic as “forgive me for lying about crashing your car”.  It might also specify whether you want to be cremated or buried.  It might also be an opportunity to tell them that they are loved.

signature

If you choose to complete this process formally you will need to ensure it is signed and witnessed and that people know where it is.  Even if you don’t want to write all this down there is a lot of food for thought. After all, if we can’t have our own way when we’re dying, when can we?

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How to start the conversation?

I met recently with a group of medical people to discuss how we can help people to plan for a good death.  From this discussion it emerged that a lot of medical staff have experience of struggling to talk to the patient about end of life matters and/or distressing conversations with the next of kin who often don’t know what the patient feels about any of it.   The struggle can be on both sides: medical staff who feel awkward or unskilled and patients and families avoiding dealing with the inevitable.

It would seem that there does not seem to be an obvious point at which you can start this conversation about how you or someone else would like to be cared for at the end of one’s life. When we are fit and healthy it’s a topic we can put off to another day but when we are ill it can feel too scary to talk about dying.  So when is a good time?  And how do we broach the subject with other people about either their death or our own?  One participant stated that she knew what her parents wanted but I wondered if anyone knew what she wanted!

Experience suggests that there can be some natural points.  For example if you are talking about another person’s illness it might prompt a discussion about what your preferred care would be if you were in their shoes.  Another opportunity could be watching television programmes whether they are soaps or documentaries.  Watching actors angst over whether to switch off a life support machine can lead to a discussion that feels safer as its not close to home.  The really hard conversation is the one you feel you need to start cold – actually saying to someone:

“Its really important that I talk to you about what I want when I die.  Not just about the funeral but what happens at the end of my life.”

3monkeys

Now the only trouble with this is you may not get the response you want.  For some people even the thought of you dying may be too much for them to even consider.  It is an old superstition that to talk about death is to invite it in.  But maybe if that person isn’t able to have a full conversation then it lets you know that you have to have a Plan B.  Maybe in stead you will have to settle for:

“If something happens to me I want you to be the person who speaks for me if I can’t speak for myself.  And if that happens then I want you to know that I have written down what I’d like and the papers will be with my will in my desk.”

Then write it all down.  If you want to tell them that you want to refuse any particular types of treatment then that will have to be an Advance Directive which is signed and witnessed to make it legally binding on the medical staff and if you know what other things you want like preferring to die at home or wanting a humanist ceremony then you can write that in a Statement of Wishes.

In an ideal world you should do both – talk to your loved ones and write it down.  Maybe it will encourage them to do the same – after all death has no respect for age or circumstances so, sadly you never know when you might need it.

Deathscapes for the future

This week I attended an event at Bristol’s Arnos Vale Cemetery to discuss the future of funerals.  Arnos Vale is a wonderfully atmospheric Victorian Cemetery full of majestic tombs and memorials whilst also having areas of wild tangled brambles and trees growing up through graves.  A perfect setting to discuss funerals and the future of managing the burgeoning problem of dead bodies.

To set the scene we were given a number of alarming statistics:

  • In Victoria times 100% of bodies were buried – now only 25% are buried
  • 600,000 deaths per year in the UK mean there are still 150,000 bodies to be buried
  • Most of us will arrange an average of 3 funerals
  • The average cost of a funeral is £4000
  • In “good” conditions a body will take 10 years to decompose
  • Modern methods of burial and preparation of the body by embalming can considerably slow down the process of decomposition
  • Each modern cremation takes about 28 gallons of fuel and releases 540 pounds of CO2 into the environment

With cemeteries providing the second largest green space in urban areas it is an interesting question as to how these spaces could be better managed in a community and what alternatives there could be for dealing with bodies whilst they naturally decompose.

natural-burial-site

The rise in green burial sites is still in its infancy and these tend to be out of town in areas that have no other use.  Typically a natural burial means that the body is not embalmed and is placed in a shallow grave in a shroud or biodegradable coffin.  This allows nature to work on the body in an optimum way.  But placing these sites out of town has issues of accessibility and is a move away from our tradition of burying people within a community.

So if we are to optimise our urban green sites how do we make them multi-purpose?We were asked to consider how a space might have a number of uses, for example could we have a site that provided natural burials that incorporated a children’s play area or football fields?  Would we be comfortable walking our dogs across areas that had bodies buried there?  How would we feel if the place that we were buried had a GPS location rather than a headstone?  I confess that I couldn’t explain why some of these ideas made me uncomfortable.  Especially considering I walk my dogs through Arnos Vale Cemetery every week and often comment that if I was buried there I’d love dogs running across my grave!

recycle

The other key theme at this workshop was the notion of recycling.  In the UK we have embraced the notion of recycling and recognise its value.  It was “interesting” to hear someone talk about human bodies as a waste product that is creating problems of disposal and pollution.  And to talk about the impact of cremation on our carbon footprint.  To use these bodies as a source of energy as in the Deathlab innovations or as a source of nutrients in the soil should not be seen as disrespectful but rather a celebration of how we can continue to impact on the world in a positive way. Even after death.

 

 

 

“…life has very little meaning without love.” – Leonard Cohen

In a New York Post interview published this week the poet, singer-songwriter and novelist Leonard Cohen, 82 said ” I am ready to die. I hope it’s not too uncomfortable. That’s about it for me.” He is about to release his latest album but he seems to think that his business with this life is over. He appears to be a man who lives alone despite long relationships in the past, mostly notably with Marianne Ihlen who died in July 2016.  Although they had not been together for decades they were still close and he wrote a letter to her in the last days of her life which said:

“Well Marianne it’s come to this time when we are really so old and our bodies are falling apart and I think I will follow you very soon. Know that I am so close behind you that if you stretch out your hand, I think you can reach mine… I just want to wish you a very good journey. Goodbye old friend. Endless love, see you down the road.”

– Leonard Cohen

As we grow older the death of those around us becomes ever more relevant. Many older people grow isolated because their siblings, friends and partners have already passed away. As each one leaves us maybe one of the side effects is that it loosens our ties with life and helps us to feel ready to go.

The Marie Curie Helper Service offers a valuable service providing companionship and support for isolated people at the end of their lives.  And I have seen firsthand how easy it is for people to suddenly realise they have no one close to them to help them through the final weeks of life: it can be a very lonely time. Maybe Leonard Cohen has realised that he doesn’t want to be “the last person standing” and so is ready to go now.  It seems an awful shame but maybe he feels he has no one left to love or be loved by. And life has very little meaning without love.

When a child learns about death

On 21st October 2016 it will be the 50th anniversary of the Aberfan disaster.  I was 11 years old when it happened and I have never forgotten it.  For many of us, the realisation that death happens is often when a member of the family dies or maybe a beloved pet passes away.  For me, it was when I saw this disaster on the television.

For those who don’t know, this was the terrible day that a “slack heap” collapsed and buried a village school.  I knew what slack was as it was what we added to our open coal fire to slow it down – basically small crumbs of coal that came in the bag with the large pieces but which couldn’t be sold on their own.  So a slack heap was where the spoils from the coal mine were piled up – rock, shale and lots of coal dust. For convenience this particular heap at Aberfan was close to the village and over time a build up of water caused this huge pile of waste to become unstable until it suddenly started to slide downhill in an almost volcanic stream of cold, wet slurry. Lying in its path was the village school.

aberfanschool

The slide moved at such a pace that nearby workers couldn’t have raised the alarm even if their phone cable hadn’t been stolen earlier.  40,000 cubic feet of debris travelled at  a depth of 12 metres and engulfed the Pantglas Junior School and part of the adjoining senior school.  It was the last day of half term: an hour earlier or a day later, the children wouldn’t have been there.

For me, this hit me on all fronts.  My father had come from a welsh mining family and had gone down the mines at 14 – if he had stayed in Wales this could have been us.  116 children and 28 adults died: children just sitting in their classrooms like I did every day.  And coal, that innocuous benign substance had done this.  Not a bomb or an earthquake: coal which we used every day.  It made the whole thing so close to me.  The “bungling ineptitude” (The Davies Enquiry) that resulted in this disaster meant nothing to me as I was too young to understand culpability and blame but rather it brought home to me that death comes stalking at any time.  My innocence about death was gone.

Can you remember when you first became aware of death? How did you feel about it?  I’d love to read your experiences.

Healthy lifestyles impact on end of life

New research from the University of Pittsburgh Graduate School of Public Health has shown that the impact of a healthy lifestyle not only lengthens your lifespan but it can also shorten the time spent disabled at the end of your life.

The duration of the disabled period near the end of one’s life has enormous personal and societal implications, ranging from quality of life to health care costs….by improving lifestyle we can postpone both death and disability.
 – Dr Anne B. Newman

Across all the participants in the study, the average number of disabled years directly preceding death averaged 4.5 years for women and 2.9 years for men. However across both gender and race groups, those with the healthiest lifestyles (nonsmokers, healthy weight and diet and exercising regularly) not only lived longer but they also had fewer disabled years at the end of their lives. For example a man in the healthiest group could expect to live 4.8 years longer than his unhealthiest counterpart and, at the end of his life, he’d be likely to spend only 2 of those years disabled as opposed to 3.7 years for the other guy.

belly

 

When I think about the end of my life like most people I want any suffering to be over quick. As we get older many of us fear having a stroke that may leave us incapacitated but not even close to death. We fear the loss of our quality of life and the risk of being a burden on others. We worry that we may never recover and it has to be accepted that a young person’s body is better equipped to overcome adversity than a body that’s already done 70 years hard graft. Whilst we know that we should “look after” ourselves to reduce the risk of serious illness I think that most of secretly hope that it wont happen to us – that we’ll be the ones that get “blessed” with that massive heart attack.  Reading this report made me realise that most people will have a period of some disability before they die and that there is no getting away from this.  And we’re not talking a couple of weeks!

Being someone who isn’t afraid of death doesn’t mean I’m not afraid of being disabled and dependent on others.  Makes me think I really should cut down on the chocolate and eat more veg.  After all, every little change can help.

Coping with the uphill struggle

When life hits you hard how do you respond?  When life hits someone else hard, how do you respond?   I’m one of those people whose first response in the face of adversity is to vent – I talk to my friends and family and I may seem to be “in touch” with my emotions and willing to share my thoughts.  But this is just my first phase.  Quite quickly I become aware that I may be boring the *rse off everyone and I also start becoming reflective and withdrawn. I need to quickly move into presenting my “coping face”.  My father brought me up to be independent and self-reliant – his view was always to do a favour, not receive one. God forbid you might appear needy. Because of this, when I do ask for help, I probably do it in a slightly surly way, qualifying it with “its not a problem if you can’t” and “no, don’t worry I’ll manage” before  the person I’m asking has a chance to answer. I think that the truth is I think its weak to ask for help.  How stupid is this?

Society is built on the ties that bind us together.  Whether through friendship, family or work our lives are built on relationships.  And what feeds those relationships is cooperation, mutual support and obligation.  Without these society is going to start to fall apart.  If we don’t ask for, and receive support what will happen to our relationships?  We’ve all had one of those friends who seems to always be in crisis and needing (yet another) favour.  But doesn’t it also make us feel good  (and maybe a little superior) when we can do that favour?  And for every friend like that don’t we also know someone who is always “fine” no matter what life throws at them?  Even though we know they’re not fine?

“From each according to his ability, to each according to his needs” – Karl Marx

People are different and different people need different types of support.  And some people can give more than others.  For some a neighbour popping in every day is too much.  For others anything short of a family member moving into the spare room is not enough.  I remember when my partner was ill, I came home from a long stint at the hospital to find a friend had used her key to go in and clean up my kitchen, leaving some soup on the stove and some flowers on the table.  If she’d asked me I’d have said “Oh no, that’s too much, I’ll be fine” but faced with a fait accompli I accepted gracefully (and somewhat tearfully, truth be told).  It showed how well she knew me that this is how she chose to support me.

It sometimes saddened me that having been in a challenging situation for many years people didn’t ask me to help out.  They knew I already had so much on my plate. Now I’m more available they don’t seem to be able to overcome the habit of not asking.  Maybe that’s why I’m drawn to my work as a death doula.  If I can’t offer that help and support to those I know maybe I can do it for others at the ends of their lives.  And maybe I’ve got some making up to do.