Having the best life we can is something many of us desire and work towards. How we, or our loved ones, can die as well as possible is something many think less about.
A month ago we lost a very dear family member to heart failure. It is hard to write about still. In truth I have found it hard to write at all over recent weeks. However there is so much to learn from everything that happens and there are some positives to share from this experience which may help others.
My mother-in-law Chris was an incredible woman. She was one of the kindest people I have ever met. She hadn’t had an easy life, but she faced both life and her impending death with grace, courage and acceptance.
This post is a tribute to how she handled the situation she found herself in, but there are three key elements that allowed her to do so:
1. Information.
The cardiologist communicated very clearly about her prognosis and, to the best of his knowledge, what she could expect at diagnosis and all along. It was a shock for Chris at first, but it was the start of her coming to terms with her shortened life expectancy and to consider and communicate her wishes. As her condition became end-stage, she was not surprised and had most things put in place.
2. Palliative Care.
As a family we had experienced together how much palliative care can help in the past and Chris welcomed a timely referral. Palliative care is not just for cancer. There is much available to assist people with end of life chronic disease. The combination of expert care to help ease unpleasant symptoms, in this case particularly severe breathlessness, and the mobilisation of extra help at home made a huge difference to her quality of life over her final few months. It also allowed us to spend more quality time with her, as she was more comfortable and able to do a little more than she would have without treatment.
3. An Advance Health Directive.
The benefits of making an Advance Health Directive or a “living will” were at least two-fold. Firstly, her wishes were clearly articulated and helped us as her family understand what she wanted. Secondly when she had an unexpected sudden turn and an ambulance was called, the paramedics were given the Directive as soon as they came and were able to act in line with her wishes, as legally obliged to do so. There was no grey area. Without it, she may have been given CPR and carted off to hospital, both of which she explicitly did not want.
Our loss is still painful. We each regret that she had to die and we all miss her terribly. Because she had a sudden deterioration on the background of a slower decline, we didn’t get to say good-bye in the way we might have liked. But we can grieve knowing that she knew and had accepted that her life was ending and that the way she died was as she had expressed she wanted – peacefully at home, dignified with a minimum of fuss and with a quick final departure.
The key lessons to achieving a better death from our experience:
- I encourage everybody to be open to having conversations around death. What may seem uncomfortable for some can bring enormous comfort.
- In addition to this, I ask my colleagues in the health professions to clearly communicate, to offer early referral to palliative care and to provide information about Advance Health Directives (or your equivalent).
Would you like to share anything about your experience of losing a loved one?
What did, or could have, made the journey better?
You also may find inspiration from my posts on Imagine yourself in someone else’s hospital bed (or chair), The best cuppa ever about kindness or an earlier exploration of Where health and creativity intersect.
With best wishes for your creative health and that of our community.
Jacquie
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© 2014 Jacquie Garton-Smith
(updated 4 May 2014)
Jacquie Garton-Smith 
Thanks for sharing this, Jacquie — how sad for your family. Death is always hard and our own death is a difficult subject to think about and plan. Your mother-in-law was selfless in doing that and confronting her own mortality.
Thanks Louise – selflessness was indeed one of Chris’ strong character traits! I am glad that you have recognised that from what I have written. She has taught us so much in so many ways.
It is both sad and a celebration of the special person she was – I have been so lucky to have her in my life. She welcomed me as another daughter and blessed me with over 24 years of friendship with lots of discussions over our shared passions of reading and gardening. She was also a fabulous grandmother – a joy that we were able to bring a grandchild into her life.
This is a very thoughtful and loving post and has made me think about a few practical things I will do this year – including getting a living will. I will also begin conversations with my mum and dad and a few close friends about death and dying and what they would want. Me? I’ve always said I wanted to be cremated and use any money I have to create a celebration of my life and the lives of my loved ones.
So sorry you didn’t have more time to say your goodbyes and I can hear your sense of loss.
Take good care and thank you for taking the time to write this post.
Liz
Thank you so much for sharing your response to this post Liz, and for being open to what it says on so many levels.
I knew before that Advance Health Directives were worthwhile but experiencing the benefit personally has made me even more sure. Being clear on someone’s wishes and being able to help see them delivered is a gift in itself.
I do also take comfort from the certainty that she knew all the things I would like to have said anyway.
Best wishes for your conversations,
Jacquie
Thanks Jacquie. Will seriously consider setting up a formal advance health directive. Irene
Great to hear from you Irene – hope you won’t need one for a long time but it can be reassuring for you and your loved ones to know that you have one. Take care, Jacquie
Jacquie, so sorry for your loss!
I just visited my mum in her care home up in B.C. yesterday, and we updated her living will. Thankfully, the care home asks that we (my sister and I) review and resign it every year (as Mum’s not competent) and I’m so glad that they do as it keeps us on track. It’s helpful to us and to the care home to have that one piece of paper in her file.
Thanks so much Laura. That must be a difficult situation for you and your sister. How great that the care home reminds you to review her living will regularly. It’s so much easier to think about when you are calm and not in the midst of a medical crisis, or worse that medical interventions that she/you wouldn’t have wanted are carried out in the absence of instructions. Hopefully in time all care homes will ensure these are discussed and regularly revisited. Thanks for sharing your experience.
Jacquie, I have sat with this post for a few months. Firstly I’d like to say how sorry I am for the death of your mother-in-law, and yet how pleased I am she was able to have the death that was right for her. I’m a firm believer in celebrating the birth of new life and at end of life celebrating a life well lived.
My husband and only child are dead, as are both my parents. This post has been important for me for my end of life wishes, and has helped me to gently advise my extended family what these wishes are. I’ve had to appoint someone outside the family as my Medical Enduring Power of Attorney, because my brother is not comfortable with my wish for no medical intervention, only pain relief, and I don’t want this to cause friction in my family. It was only a week ago that I made it clear to him that I loved him, respected his views but had to do what was right for me. I also advised him that I’d chosen a friend to advocate for me so that he’d not have to do something that didn’t sit well with him. I’ve had wonderful, empathetic help in filling in my advanced care directive and feel a sense of peace that I’m now prepared. At present I’ve no fear of death, not too keen on suffering, but who knows what I’ll be like when the time comes. 🙂
I believe it’s important to both share our sorrows and open the lines of communication on end of life issues.
Take care
Tricia
Tricia thank you – I know you have experienced great loss. It does take time to grieve but it is a consolation to know someone’s wishes and to be able to help ensure they are followed. Your decisions are so clearly thought through and communicated. Your choice to nominate someone who you know will feel comfortable with your choices is very respectful. I hope that your arrangements won’t be needed anytime soon but that they bring you comfort nonetheless. Best wishes and thank you for sharing your wisdom.
Reblogged this on docgrief and commented:
A reminder of the power of advanced care directives and personal connection to death
If only we were all so lucky to live into old age and have the opportunity to realise what was coming and discuss our wishes. We can really make a difference in this space. Although I appreciate that too can be difficult, to have a loved one taken without warning before one’s time is not something anyone can prepare for.