Health & Wellness

Palliative Care Week – Why we need to talk about End of Life Plan now

May 21, 2018
National Palliative Care Week

National Palliative Care Week

 

What is your biggest fear?  Today, I’m going to discuss one of mine and the need to face this fear as well as making plans for the future.  It isn’t a pleasant topic but an important one we all need to address.

For most of my life my biggest fear was death. So when I read that the prompt this week at Denyse Whelan Blogs was My Biggest Fear and having also received an email about National Palliative Care week, I felt the universe was sending me a message.

I have never wanted to think about death and remember having nightmares as a child that my mum would die. It was a subject I just wasn’t comfortable with. Some people have faith to help them overcome fear. For others it might be an acceptance as we age. The one thing that is certain is that there is no escaping death and I do believe that our time is a matter predetermined.

As I matured I never dwelt on the subject although I lost my Mum at 60 and my Dad at 66 both to cancer. My brother handled all the details of their funerals, but I know that neither of my parents ever discussed what they wanted. It wasn’t really the ‘done thing’ nearly 40 years ago.

It wasn’t until my brother passed away a couple of years ago at 65 and also to cancer, that as my 60th birthday approached my mortality was more frequently on my mind.  The more I thought about it, the more I felt comfortable and it was serendipitous when I was asked to write a post for Carol Cassara at a Healing Spirit – Take Control of your Mortality and start living the life you want now.

Today, I was having coffee with a friend who is in her early 60s.  We had been discussing travel and life and she made the statement that she had no fear of death because she had had such a wonderfully full life. Her travels have taken her around the world and she has three beautiful children all with their own families.

So perhaps it is time to face the subject that people like to avoid and make some practical decisions.  It is National Palliative Care Week 20th – 26th May so a pertinent reminder for all of us to seriously consider how we want our ‘end of life’ experience to be handled.  You have control about your life and also your death. 

Recently an Australian scientist, David Goodall made the trip to Switzerland at the age of 104 to end his life the way he wanted to – with dignity.

Euthanasia is a very sensitive subject but he felt that was what he wanted, he had lived a good life and so he travelled to another country, because assisted suicide is illegal in most countries around the world and was banned in Australia. The state of Victoria became the first to legalise the practice last year, with strict conditions which don’t come into place until 2019.

National Palliative Care Week

The Australian Government Department of Health website has specific information and ideas about Palliative care and End of Life Planning.

They have four areas which are covered under the Palliative Care and End of Life Planning subject.  I have given a very brief summary here so would suggest you go to the website to read more in detail.

1.  Understand your end of life care options

  • This covers what palliative care is and also what options are available to the patient.  Would you like to stay at home, in  a hospice, hospital or aged care?
  • Palliative care is also about practical and emotional support for the individual and family

2. Questions you need to ask yourself

  • What do you want?
  • Would you family know what you wanted?
  • Who would be the decision maker if you were unable to make decisions?

3. Starting the Conversation

Of course, no one likes talking about end of life, especially with their family.  However, it is so important to have the conversation so you can convey your wishes and be very clear how you want to handle this important time of our life.

When my father-in-law passed away a couple of years ago, the only information we knew was that there was a burial plot that my in-laws had purchased many years ago.  It was difficult for my husband to make decisions because there was no Advanced Care Directive in place and not knowing what his father would have wanted. Questions surrounding life support etc were never discussed.

4. Documenting your wishes

This includes Advanced Care Plans and Advanced Care Directives to document your wishes and appoint a decision maker, if you are unable to communicate your wishes.

It is also important to document what will happen to you after you die.  This is such an emotional time for family and friends that being specific of what you want to happen will not make the time less sad or emotional but will certainly be one less decision they have to make.

The following Video includes thoughts from prominent Australians about how they feel about death, palliative care and end of life.  All agree that no one wants to talk about death or dying or loved ones suffering but also agree that we need to discuss. Paraphrasing Jean Kitsen:

we all talk easily about holidays,, reality T.V, food allergies and even menopause but when it comes to the subject of death and dying we block our ears and sing la,la,la,la,la.

 

 

 

The more we discuss the subject the easier it becomes to overcome our fears.  Once we have a plan in place we can then just get on with the business of living and enjoying the life that we have.

Have you put a Palliative Care and End of  Life plan in place?

Have you had the difficult conversation with your family?

Are you facing this situation with your parents?

Please join the conversation and share your story which may help others.

 

 

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48 Comments

  • Reply Lydia C. Lee May 21, 2018 at 06:38

    It’s a hard one, but it does make it easier on others if you have a plan.

    • Reply Sue Loncaric May 21, 2018 at 08:10

      Yes I’m only coming to realise that now Lydia. I lost my parents when I was much younger but am now dealing with in-laws. I am definitely going to put something in place to make it easier for my husband and children when the time comes. Have a beautiful week and thanks for stopping by xx

  • Reply Candi Randolph May 21, 2018 at 07:47

    Thanks for approaching this topic, Sue, and it is very timely for me as my dad has just entered hospice care at the age of 96. He, and my mom also, have discussed their wishes with us for how they want things handled when they pass. We have had a number of discussions. Although I don’t think it makes the loss of a loved one easier, it sure helps knowing what their wishes were. Open communication is key.

    • Reply Sue Loncaric May 21, 2018 at 08:09

      Hi Candi, I was thinking of you when I wrote this as you mentioned visiting your Dad at the hospice. It isn’t a pleasant topic but it does make life so much easier for all concerned. Of course, as you say it doesn’t make the loss any easier but it does help to have a plan that others can follow without thinking when they are grieving. Communication is definitely the key. Have a beautiful week and I hope your Dad is okay xx

  • Reply Natalie May 21, 2018 at 09:58

    Thanks for approaching this topic, Sue. As the saying goes, there are two things in life we cannot avoid, i.e. tax and death. In my family, we’ve had this conversation and have the documentation. It’s a hard thing to discuss especially if the person doen’t want to face it but it’s the right thing to do.

    • Reply Sue Loncaric May 21, 2018 at 10:15

      Yes I’m gearing up to have the conversation with my husband and children. I want to ease their pain and make it easy for them to know my wishes. Have a beautiful week, Natalie xx

  • Reply Vanessa May 21, 2018 at 10:54

    I do have an advanced care directive but that is a far as I’ve gotten on this topic.

    • Reply Sue Loncaric May 21, 2018 at 12:32

      Hi Vanessa you are ahead of me all I have is a Will. I need to get things organised and know I will feel more comfortable then.

      • Reply Vanessa May 23, 2018 at 08:42

        I only got one as it was mentioned on the hospital paperwork when I had my tonsils out last year. Figured, sure, I can get one! It was only a recommendation and not a compulsory thing but there was no way I was taking any risk of my surgery being cancelled so I got one.

        • Reply Sue Loncaric May 23, 2018 at 09:05

          Oh I didn’t know they included that in paperwork Vanessa. I’m still not doing as I say but working on getting my affairs in order. Have a great day and thanks for stopping by. xx

  • Reply Retirement Reflections May 21, 2018 at 11:24

    HI, Sue – Thank you for addressing this very important topic that is often very difficult to discuss. I don’t have fears of my own death (at least I don’t think that I do), but I do have fear of the death of those that I love. My family has just begun to approach this topic much more openly and we have been having some important and meaningful discussions.

    • Reply Sue Loncaric May 21, 2018 at 12:31

      I’m coming to terms with my own death Donna and was afraid for years. I lost Dad 37 years ago and Mum 32 years ago and my brother organised everything. Over the last 2 years my FIL has passed away and my MIL was faced with moving to aged care. We had to learn about Advanced Care Plans and Aged Care Homes pretty quickly which was distressing for my husband.

  • Reply Kirsty Russell May 21, 2018 at 13:27

    I went through this with my father a few years back and we learned a lot of things through that process. Mum and I have now had the difficult conversations and have put legal plans in place as she faces her own health battles. It’s not an easy conversation to have but it’s so very necessary. I feel more comfortable knowing my Mum’s wishes and having an advanced care plan, funeral plan, enduring guardian and power of attorney all in place, for when we need them. Thanks for shining a light on this x

    • Reply Sue Loncaric May 21, 2018 at 16:53

      Hi Kirsty! It isn’t easy is it but something that will definitely make everything easier when the time comes. You appear to have it all covered, I only have my Will at the moment so I need to get everythng else in place. Thanks so much for stopping by to leave a comment and have a beautiful day xx

  • Reply leannelc May 21, 2018 at 16:03

    We had a lot of these things to deal with when my dad got Alzheimers Sue – they lose the ability to make those choices for themselves and it’s so hard to be the one who decides what to do when things worsen. I talk to my Mum about it occasionally and I have told my husband what I want, but it’s still something we all seem to shy away from – like we’re hexing ourselves by discussing dying. It makes it so much easier for those left behind if some of those decisions have been made in advance.

    • Reply Sue Loncaric May 21, 2018 at 16:54

      I know! I never wanted to talk about it but now I do and it is hard to just get things organised and done. That is my goal for the next couple of months – to really decide what I want and then document it and have the conversation x

  • Reply Shirley Corder May 21, 2018 at 16:39

    Thanks for tackling a difficult subject, Sue. My husband and I have talked plenty about it, but we plan to put it in writing for our kids for when the time comes. My mother-in-law died at age 84 with two clear instructions. She was NOT to be cremated – and she was to be buried in the family plot in Cape Town. Problem was by that stage she had advanced Alzheimer’s and didn’t realize she no longer lived in Cape Town! There was no way we could get her body to the family plot. So she had (or didn’t have!) a choice. One or the other. So we went with cremation so we could drive to Cape Town to sprinkle her ashes on the family grave. I don’t think she would have been happy, but the family left behind need to have freedom to change the requests if necessary. Knowledge – Key to a Healthy Life – A to Z revisited

    • Reply Sue Loncaric May 21, 2018 at 16:55

      It is so hard to know what to do for the best isn’t it Shirley. I also think we talk about the subject vaguely but don’t put any firm plans in place. My brother handled everything when my parents died which was nearly 40 years ago now.

  • Reply Sydney Shop Girl May 21, 2018 at 17:47

    Sue, thank you for sharing your own experiences and your thoughts in this post. It is a balanced and very informative post and it’s wonderful for me to read the thoughts and perspective of ‘the general public’, My work sees me deal with palliative care and advanced care planning on a daily basis. it’s never easy to start the discussion but my hospital’s palliative care unit are doing a lot to get this important discussion started early in the minds of our patients.

    I still find it a difficult conversation to initiate with my patients. Some people volunteer their preferences up front but many do not. It’s harrowing for loved ones to have to make The Decision for a parent or aunt or uncle.

    SSG xxx

    • Reply Sue Loncaric May 22, 2018 at 06:32

      Hello SSG and I didn’t realise that this is the area that you work in. It must be so difficult having conversations with patients and their families. I actually hadn’t thought about aunts and uncles who might not have children or anyone to organise their affairs. I wasn’t sure how to write the post because in no way am I a professional or expert in this area, but I do feel it needs to be hightlighted. I appreciate your comments and that you found the post informative. Have a beautiful day! x

  • Reply sixlittlehearts May 21, 2018 at 17:50

    I quit palliative care after just 3 months. I have stage 4 breast cancer in my brain. I am sure it is so helpful to some but I felt like I didn’t need the support. It was depressing! I am happily doing great living life to the full.

    • Reply Sue Loncaric May 22, 2018 at 06:34

      Hello and thank you for taking the time to comment. Yes Palliative Care isn’t for everyone and what a wonderful attitude you have. I do feel it is important for people to have control over the life up to their death and after as well. Good luck and keep strong you obviously have a positive approach and that can sometimes be the best medicine of all. Have a beautiful day! xx

  • Reply Circle of Daydreams May 21, 2018 at 18:18

    I’m thinking about this a fair bit at the moment…. I have an elderly Mum (88) who’s had open heart surgery in the last year or so, and a couple of very bad falls ending in vertebrae fractures and broken ribs. My best friend lost her Mum yesterday after a long and sad decline, and my other closest friend has a younger sister in palliative care right now. It brings everything into sharp focus rather quickly and makes you think about hard things. My Mum and I went to the cemetery a few years back and organised her funeral plot, and she has pre-paid her funeral and laid out all the songs and readings for it in a book. We’re going to start working on writing down her life story soon. It’s all very confronting, but I’m glad we’re doing it while she’s still mentally good and able to enjoy the reminiscing.

    • Reply Sue Loncaric May 22, 2018 at 06:38

      Hello Linda and thanks for stopping by to comment. I think the majority of us just don’t realise the importance of preparing for our death or a death of a loved one. Sure, it isn’t a topic we like to discuss but at least you know when you Mum passes you won’t have to think about what she wanted for her farewell. How wonderful to write her life story. We all have a story to tell and it is important to keeping that person alive in our hearts and minds. I hope your Mum is okay, I have a MIL who is 92 so I understand fractured ribs and heart surgery. Sending best wishes to you and your Mum and have a beautiful day! x

  • Reply Dorothy Berry-Lound May 21, 2018 at 23:55

    This is something I have worked through with my parents recently. Hopefully they have many years ahead of them, but it was good to talk through their wishes for various scenarios and then get it all written down and communicated with the family (so everyone is aware of their wishes). My husband and I have done this to. It is a good thing to talk about, act upon and then put to one side until it is needed.

    • Reply Sue Loncaric May 22, 2018 at 06:30

      Hello Dorothy and welcome! It is a difficult subject and as my parents died almost 40 years ago my brother handled everything. Losing my FIL two years ago and also having to deal with my MIL’s move to aged care has highlighted the need to have Advanced Care Directives etc in place. It puts everyone’s mind at ease. Thanks for visiting and have a beautiful day. x

  • Reply b+ (Retire In Style Blog) May 22, 2018 at 06:43

    For those of us that are nearing 80, death is not even a discussion…it just is. Here in Oregon, USA we have end of life rights. Doctors are very attentive to our wishes, refusal of care, etc. A living will allows us to determine if we want life support when there is NO hope. If it works like it should, we will be good.

    This post opened the subject of many women of midlife as it should. Thank you.

    • Reply Sue Loncaric May 22, 2018 at 06:47

      Hello and thank you for visiting to leave a comment. It is good to know that you have things in place. The problem arises when for example my FIL didn’t have an end of life plan in place and so my husband was put in the position of when to turn off life support. It is important for us to have some documentation in place so that others don’t have to wonder what we would have wanted. I’m so pleased with the response to the post because we never know when our last day will be on this earth so it is a good idea to have everything in place so we can at least enjoy living. Have a beautiful day xx

  • Reply Haralee May 22, 2018 at 08:24

    End of life is a very needed subject of conversation! I am all about planning for the future and the future for everyone is death. Here in Oregon there is Death with Dignity but it is very restrictive and does not cover Alzheimer patients. I am hoping that will change.

    • Reply Sue Loncaric May 22, 2018 at 08:27

      Hi Haralee it is interesting for me to read comments from those around the world and how different countries view End of Life Planning. Thanks for your comment and feel free to visit again. Have a beautiful day xx

  • Reply heatherericksonauthor May 22, 2018 at 11:57

    I applaud you highlighting palliative care. It is such an important part of managing both chronic and life threatening illnesses. I am so grateful that the medical field has embraced palliative care and has gotten very good at it. Palliative begins long before a person is preparing to die. As soon as a person is diagnosed with a disease like cancer-even if it isn’t terminal, they should ask about palliative care to manage symptoms and side effects.

    • Reply Sue Loncaric May 22, 2018 at 16:33

      Yes you make a great point Heather that as soon as someone is diagnosed then they should be looking at how to manage it in the short term as well as the long term. Have a lovely week and thanks for stopping by it is always lovely to hear from you. xx

  • Reply Denyse W May 22, 2018 at 17:21

    Well, what a topic and what a well-sourced one encouraging so many people to comment and to reflect. We are pretty practical people in our family and with my husband being very unwell for some years, a while back we did have some discussions and our adult kids know of our wishes.
    Now that we are both ‘getting on’ and even though I have had cancer and we are both approaching 70 we have powers of attorney done and wills. Big hiccup though is that they were done some time ago and maybe we need to check the details out. Our solicitor died and we have kept the written materials.
    Prior to my hospitalisation in 2017, I consolidated a locked folder here that our kids know about and it contains all of the relevant certificates and so on.

    In terms of my Dad, he has an advanced care plan and at age 94 wants nothing heroic done if he became so unwell it was unlikely he would recover. We had a ‘taste’ of what might be to come recently with Dad’s first ever (since 1947) hospitalisation for almost 3 weeks. He has recovered well enough to return to his Unit. My brother is the executor of Dad’s will and I am in agreement with that. He like Dad is an accountant so he can do that!

    Mind you, it is still a challenging conversation to have at any time and I applaud you for opening up the conversation here.
    Thank you for linking up for #lifethisweek 21/52. Next week’s optional prompt is “How Did My Blog Start”
    Denyse

    • Reply Sue Loncaric May 23, 2018 at 07:32

      Hi Denyse, yes the post has certainly resonated with many. I am starting to seriously think about it all because one never knows what tomorrow will bring. As you know my parents died quite young so my brother looked after everything. Many of us don’t think, or want to think, about the topic until we are faced with a serious illness and then sometimes it is too late. Good idea to have it all in a locked box so your children know where to find everything. We need to update our Wills and get all the other documentation sorted as well. Have a lovely day and hope you are feeling okay after the last round of surgery xx

  • Reply Victoria May 23, 2018 at 04:56

    We got all of our paper work done back when husband was diagnosed. It has not been notarized or filed yet though because husband doesn’t want to take that step yet, fear I think.

    • Reply Sue Loncaric May 23, 2018 at 07:25

      I feel for you both Victoria as it is such a hard time. I can certainly understand your husband holding back from filing. We don’t really want to face reality sometimes. Sending you both my best wishes xx

  • Reply BoomingOn May 24, 2018 at 10:56

    This is a very important topic, but I must say I haven’t really thought about it in relation to myself. End of life decisions aren’t usually discussed until we think someone is approaching that point in their life, which of course is really difficult – but necessary.

    • Reply Sue Loncaric May 24, 2018 at 12:15

      It is an important topic but one I have left up until this point. I’m feeling more than ever that I want to have everything in place so my family know what my wishes are and it makes life easier for them.

  • Reply Kooky Chic May 24, 2018 at 12:47

    My parents and siblings talk about what we need to do when the time comes for all of us. We already know what we hope will happen which may seem strange but we have a huge extended family and have already, unfortunately experienced many deaths, some very traumatic. So plans are in place should and when we need them.

    • Reply Sue Loncaric May 24, 2018 at 13:01

      Hello and thanks for visiting to comment. You must all feel a sense of relief knowing that your plans are all in place so you can now just enjoy life. I’m sorry to hear about the traumatic deaths in your family. All we can wish for is that our loved ones don’t suffer. Have a beautiful day and take care xx

  • Reply writeofthemiddle May 24, 2018 at 12:59

    It’s an important topic Sue and a hard one to face but there’s no denying that we are all going to die one day! Having lost my Dad just recently, I know that there are many, many decisions to make when end of life becomes inevitable. So, to know what your love one wants takes a lot of stress from the family during an intensely stressful and emotional time. I have no palliative care or end of life plan in place for myself. I struggle to make a decision between whether I’d like to be cremated or buried. I know I need to give these things more thought though…so it’s not so tough on the family when that time comes. #TeamLovinlife

    • Reply Sue Loncaric May 24, 2018 at 13:03

      Hi Min, yes this post must have brought back sad memories for you about your Dad, I’m sorry if it did. I’ve never wanted to face it all really but now as I’m 60 and who knows what the future holds I need to put something in place. I was actually talking to Rachel yesterday and she told me that even if she didn’t agree she would ensure that my wishes were fulfilled. It does make it easier even though it is such an emotional time xx

  • Reply Jo Tracey May 25, 2018 at 09:02

    I have my parents up from Sydney this weekend and Dad’s health isn’t great – it hasn’t been for some time. I was talking to Mum about this subject this morning on our walk – I have no idea what they want. Dad is nearly 80, but Mum is a still very fit 76. A great topic.

    • Reply Sue Loncaric May 25, 2018 at 17:01

      Hi Jo it is a difficult subject but I think once the conversation takes place everyone breathes easier. Plans are in place, people have discussed their wishes and then everyone can just get on with the business of living. Sorry to hear your Dad isn’t well but lovely for you to spend time with both your Mum and Dad on the weekend – enjoy xx

  • Reply Deborah May 25, 2018 at 09:41

    My dad spent 2wks in palliative care before he passed away. He’d been in hospital a month before that and mum spent all day every day with him for his final 6wks. I visited almost every day and those last two weeks were hard. He didn’t wake for the final 6 days so it was just waiting.

    The palliative care nurses were very hands-off… and I mean that in a good way. Obviously dad wasn’t eating so they just left us to it. They called mum and I in the middle of the night a few days before the end and we stayed with him. I know some people like to go home at the end but I can’t imagine my mum having to deal with that at home and being reminded all of the time with those final weeks and days.

    #teamlovinlife

    • Reply Sue Loncaric May 25, 2018 at 17:03

      Hi Deb I remember I was about a month away from having Rachel and my Dad was dying from cancer. I saw him the night before he died and told him not to wait for the baby. He passed away overnight. All I wanted was for both of my parents not to suffer and the nurses were so lovely back then – 37 years ago. It makes such a huge difference to the family and patient if the nursing staff are supportive. Most who work in palliative care are though aren’t they?

  • Reply Grammy Dee | Grammy's Grid June 9, 2018 at 21:55

    It is definitely something we need to discuss with our family but a subject we’d rather not talk about. Thanks Sue for writing about this unpleasant topic. I shared your post x 4 ♥

    • Reply Sue Loncaric June 10, 2018 at 08:40

      Thanks for stopping by to comment Dee and also for sharing my post. Have a great weekend xx

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