good life, good death, good grief

Good Death Week blog

The following blog posts were written by guest writers as part of Good Death Week 2018.

What is a "good death"?

In our final guest blog for #GoodDeathWeek, Jane Duncan Rogers, author and founder of Before I Go Solutions, talks about the death of her husband and how that made her want to plan ahead for her own "good death"...

My husband was lying in the hospital bed. Drains, tubes, and a catheter were connected to him in various ways. The constant beep-beep of the machine next to him was irritating beyond description, particularly at night-time.

We’d been told there was nothing more they could do, and by this time he was too weak to be moved home.

‘Home is where you and I are, and here we are now’, I spoke to him softly. He nodded his head. We had often talked about this, but it was clear his preference had been to die at home. Later that day, I asked the doctor to take out all tubes other than those keeping him pain free. She looked up sharply, as if to wonder whether I knew what I was saying.

But I was clear – no more beep-beep noises. Silence, stillness was what was needed. Perhaps broken only by the sound of some quiet singing from myself and another good friend. A few hours later, he had died.

So, was that a good death? How can you tell unless you know what the person dying wanted?

I wonder if Philip had been less afraid of what death meant, would he have been able to accept it knocking on his door, and let death in? Would that have meant he might have been willing to come home earlier on, knowing he would be coming home to die?

I’ll never know, and wondering is a really good way to prolong suffering. Better to move on, to think about how I might be able to provide for my own ‘good death’.

So, what does a good death mean for you? Just have a ponder about that during this Good Death Week. And in the meantime:

Here are 5 contributing factors that will help you increase your own chances of a good death, and ease the suffering of your family and friends afterwards:

  1. Be as pain-free as possible (this will be increased if you have completed and discussed with the relevant people your advance directive or living will, as well as appointing a power of attorney to act on your behalf)
  2. Have resolved any family disputes or conflicts with others (keep up to date with this)
  3. Review life and find meaning in it (to have explored what life and death mean to you)
  4. Be willing to explore the concept of death, as well as the practicalities of your own one. Why not dream about what you ideally want? It will at the very least enable you to be less afraid of death while you are alive.
  5. Have written down what you want. Complete a copy of my Before I Go workbook or something similar, and tell someone, so at least one trusted person knows what is wanted in the final days.

All these will give you peace of mind about what will happen when you have departed. Knowing you have demonstrated your love for those left behind in a very practical manner brings an enormous amount of relief.

Find out more about Jane and her Before I Go course here


A Good Death in a Care Home?

In this special blog series to mark Good Death Week, Alison McPherson, Home Manager at Hillside View Care Home in Paisley, discusses what a good death can be like in a care home, and how she and her staff help people to die well...

Hillside View

What does dying well look like?

For many of us a good death would be to go to bed, and not wake up. A death where there is no suffering, no pain, no discomfort.

Unfortunately for many of us, this will not be the case. For many of us, chronic health conditions will result in a decline in our physical capabilities, and ultimately progress to death, over a long period of time.

Within Hillside View we work with two very different groups of people. We have younger people with little or no family contact, and we have older people who have relatives who are very involved in their care.

Very often where there are no relatives, the care team become the family members, and they then take on the role of supporting the person to the end of life. We hold funeral services within the care home, and this can lead residents to begin the process of planning their own funeral. And when they request this, we arrange for it to be recorded within the plan of care.

While discussing their funeral plan, we will have the difficult conversation of how they would like to be cared for at the end of their life. They often advise us that they don’t want to leave the care home, and this is then discussed with the General Practitioner, and the Care Home Liaison Sisters, to ensure that all possible needs are addressed and recorded to ensure that their wishes are being respected.

When a resident who has no family is close to end of life, the staff team ensure that that person is never left alone. There is always a staff member with them offering comfort and reassurance. This staff member will advise the wider care team of any pain or discomfort allowing prescribed medicines to be administered.

Often, the staff member who has the strongest relationship with the resident will be the person who will provide this comfort and reassurance.

When the resident has no family members, their memorial service is performed within the care home, allowing all staff to attend, and allowing staff to grieve for the resident and to remember their life with us.

When working with the family of a resident who is at the end of life, normally I as the care home manager will have the difficult conversation and advise them of the inevitability of the situation. At this time, they are offered the use of the family room, and they are offered the opportunity to stay over to be with their family member.

Throughout this period, staff members speak to the family members offering comfort and reassurance, allowing the family member to talk about their loved one, and reminiscing with them, allowing them to begin the grieving process.

We work with local clergy too, to ensure that the spiritual needs for the residents and the family member are addressed towards the end of life.

Dying well is having your wishes respected, having your medical needs addressed to promote comfort, to be reassured when anxious, to prevent distress, and to be allowed the opportunity to let go of this life when we are ready.

At Hillside View, we would like to think we help people to have a good death.

A Good Death in a Hospice?

In today's guest blog as part of #GoodDeathWeek, Kenny Steele, Chief Executive of Highland Hospice, talks about how organisations like his can help people to have a good death when the time comes...

What is a good death? ”I’ll tell you when I’ve experienced it” is the honest answer and since I feel reasonably hale and hearty as I write this, fingers crossed…. What I think might be a good death for me (totally unexpected and immediate) might be a terrible experience for those close to me (I think/hope!). Ever get the feeling you’re not going to get a straight answer?

What is easier to describe is what good care looks like, which can contribute to a better life before death and arguably a better experience of death for family and friends.

Describing what that best possible care would look like would be describing hospice care. There is no doubt in my mind that if you die or receive care in a hospice, you and your family will experience incredible levels of support and I know from the numbers of thank you letters and cards that we receive that families are incredibly appreciative of the work of our staff and volunteers. Often you will hear people talk about the feeling of relief, safety or sanctuary that they experience in hospice care.

So what makes hospices so special? The answer to this is complicated but I think can be summed up as:

1. It’s what we do. There are no other organisations in our community whose whole focus is on palliative and end of life care. This builds a positive culture and pride in getting it right and a huge amount of expertise amongst the team.

2. Community ownership. As a Chief Executive of a hospice I answer first to my community, before statutory bodies or regulators (although I do try to keep them happy as well!). However most of my funding and support comes from the local community which we serve. That helps to ensure that serving people remains the focus.

3. Money. We’re told it’s what makes the world go around and linked to the point above, the additional funding we receive through charitable donations is what enables us to remain entirely focussed on people’s needs and maintain a well resourced, compassionate team working in a wonderful environment.

So, is a hospice death the best death? Before we jump to that conclusion we need to consider how you end up in hospice care. The general criteria for admission to a hospice bed is that your physical and/or psychosocial symptoms are too complex to be managed in another setting. You may count yourself lucky to have a hospice bed available in such circumstances but unlucky to need a hospice bed in the first place. I therefore believe it is a false generalisation to suggest a hospice death is a better death than a death in another setting. Hospice in patient unit beds are however a highly valued and necessary resource in our community to support those with complex needs towards the end of life.

However, for me, the future of hospice does not necessarily mean more hospice care but rather the support of appropriate care toward the end of life in all settings. Highland Hospice supports some excellent care homes who we believe manage end of life care very well. They may struggle with some of the complex cases the hospice manages and their access to resources will be limited but they support their residents with great dignity and respect at the end of their lives.

I believe there is inherent compassion in our community and its various institutions towards supporting those with life shortening illness and experiencing bereavement. However for those of us not dealing with these issues on a regular basis it can be difficult to know what to do, what to say or how to offer support. This extends to the health and social care workforce as well. Everyone wants to do their best for those they are caring for and their families especially at end of life when there is only one chance to get it right. Much of the work of hospices going forward needs to be dedicated to supporting our compassionate communities so that as a society we can expect to have a good life and a good death in whichever setting is appropriate for us.

So, sorry to have swerved the question but here’s to a hale and hearty life and a society that supports you and me to experience a good death wherever that might be.

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Before I die I want to ...
Bereavement Charter for Scotland