UK: Talking About Dying Matters: So What Are You Waiting For?

Last Updated: 23 May 2016
Article by Karen Taylor

Most Read Contributor in UK, August 2017

Last May I wrote about the launch of the Dying Matters Awareness Week (DMAW), whose theme, 'Talk Plan Live', highlighted the importance of talking about dying and, importantly, of planning ahead.1 On Monday evening (9th May), I attended the launch of this year's campaign, 'The Big Conversation: Talking about dying won't make it happen!' Once again, the aim is to encourage people to talk to their loved ones about dying so that their wishes can be met and important things are not left unsaid.2 Whilst death happens to all of us, most of us still do not feel comfortable talking about dying, death or bereavement. I hope that by sharing my own personal story, this week's blog might help encourage you to feel more comfortable talking about the only certainty in all our lives.

While everyone's experience of end of life care is unique, and identifying when a person may be approaching the last phase of life is often difficult, failing to talk about it is something that can never be revisited. How people die, lives on in the memories of those who are left behind, feeling you have done all you could to help ensure your loved ones live as well as possible until they die and that you did all in your power to support them to have a good death can help the bereavement process.

While I have researched and published a number of reports and articles on the quality of provision and experience of palliative and end of life care, attending the launch of the Big Conversation Campaign, reminded me of the power of patient stories. Everyone has a story to tell, for some it is hard to articulate and others may feel no one else would be interested. But, as I sat and listened to a truly poignant but uplifting "premier" of Josh's story (who died aged 22), I couldn't help but reflect on my own story and the realisation that if I believe that people should talk about death and dying, then I need to do that myself. I've also failed to keep it within our blog word-count limit, so please bear with me.

My story started nearly ten years ago, the first time I was summoned home by my mum as my dad, who was suffering from multiple long –term chronic illnesses (he was an insulin dependent diabetic and had been diagnosed with Chronic Obstructive Pulmonary Disease, Kidney Disease and rheumatoid arthritis) was "dying". His condition had suddenly deteriorated and he had been admitted to hospital where his consultant suggested he might not survive his latest bout of pneumonia. Following a four hour dash up the A1 from Kent to Lancashire, on that occasion, and on at least seven other occasions over the next seven years, he pulled through, albeit each time he was a little frailer and increasingly dependent.

His doctors suggested his strong heart and indomitable spirit was what helped him pull through. But we knew that it was the love and support of my mum (his full time carer) and family (me (the eldest), my two brothers, three sisters, numerous grandchildren and a growing number of great grand-children) that kept him going and allowed him to defy the odds. Obviously my mum's meticulous attention to his vast array of medication and other care needs was clearly a factor. While we knew his needs were complex and involved frequent visits from an array of healthcare professionals, as well as numerous hospital visits, none of us appreciated just how hard it was caring for him 24 /7. Not once did my mum let on, all she ever said was that they were fine, happy just being together, surrounded by their family, and looking forward to their 60th wedding anniversary.

Knowing what I do about end of life care and the importance of talking about your wishes, making plans, etcetera, I tried to have those conversations, but my dad would have none of it, he simply wouldn't discuss it (nor had any of the numerous healthcare professionals he came into contact with suggested to him or my mum that this was something he should think about). So I had those conversations with my mum. She assured me she knew his wishes and that he had shared his views and feelings with her, but that he didn't plan to die any time soon. I therefore reluctantly accepted his stance and didn't talk to him about death or dying.

Then in December the call came that I had never contemplated. My beautiful, kind, indispensable mother had died suddenly of a massive heart attack. Feelings of shock and disbelief aside, there was also a real anger. Mum had called me two evenings earlier, she had been feeling unwell and had called her GP who visited her at home. Her symptoms were breathlessness, a fluttery feeling in her chest, aches in her shoulders and pains in her lower back and side. Her GP checked her over and could find nothing wrong and assured her she had nothing to worry about. She told him she was worried it might be her heart and to allay her concerns he told her he would refer her for a heart scan – which he said would be in a few weeks.

When she called me later that evening she told me she really didn't feel well, when she described her symptoms I was concerned that it sounded like her heart and suggested she should phone an ambulance. The next day the pain was worse and my sister persuaded her to phone an ambulance. The ambulance service sent a motorbike paramedic who checked her over and decided she should go to hospital, the ambulance arrived and the ambulance crew reminded each other that the "new urgent care referral protocol " was not to take a patient to hospital unless absolutely necessary. They explained that they could send another doctor or she could wait for more than seven hours on a trolley in A&E. Unsurprisingly, and given her caring responsibilities, she chose the former (as I suspect would majority of people). I'd like to think that had I been there I would have insisted she was taken to hospital, but hindsight as they say......

The out-of-hours doctor sent by the ambulance team arrived, talked to her, listened to her chest and told her he was satisfied she was OK. She clearly wasn't and tragically died sometime during that night. The death certificate said the cause of death was congestive heart failure and hypertensive heart disease – something that doesn't happen overnight and a risk we should have, but weren't, aware of.

Her death was so sudden and unexpected that no one had talked to her about her wishes, it had never seemed necessary or appropriate, and indeed our expectations had always been that my dad, who was six years older, would die first. When we did talk it was usually about the things she would be able to do when she no longer had caring responsibilities. So we didn't know what she wanted, but Dad did and, despite his shock and grief, he was able to help us organise an amazing funeral. My sister's best friend is a funeral director, she was absolutely fantastic helping my family through this difficult time (interestingly few research reports acknowledge the role of the funeral director).

Unfortunately, the shock and grief took its toll on dad, he had lost his soul mate and his reason for living and five weeks and three emergency admissions to hospital later (the antidepressants they prescribed interfered with his diabetes medication) and a few days after his 59th wedding anniversary (they never did make it to 60), he died. This time though he was with my three sisters who were taking it in turns to look after him. In those intervening weeks we also talked to him a lot about our lives together, about how we all felt, and about what he wanted, so his dying seemed natural as all he wanted was to die at home and join my mum. What I will always regret is that we never had any of those conversations with my mum.

My reason for sharing my story with you is to emphasise how you should never take anything for granted and that we all need to have these important conversations with our loved ones. Moreover, Dying Matters Awareness Week and the Big Conversation Campaign is a perfect opportunity to raise awareness of the importance of talking about dying, death and bereavement. Should you need any help in starting these conversations, the Dying Matters Coalition has many tools and resources to assist – so what are you waiting for?3 





The content of this article is intended to provide a general guide to the subject matter. Specialist advice should be sought about your specific circumstances.

To print this article, all you need is to be registered on

Click to Login as an existing user or Register so you can print this article.

In association with
Up-coming Events Search
Font Size:
Mondaq on Twitter
Register for Access and our Free Biweekly Alert for
This service is completely free. Access 250,000 archived articles from 100+ countries and get a personalised email twice a week covering developments (and yes, our lawyers like to think you’ve read our Disclaimer).
Email Address
Company Name
Confirm Password
Mondaq Topics -- Select your Interests
 Law Performance
 Law Practice
 Media & IT
 Real Estate
 Wealth Mgt
Asia Pacific
European Union
Latin America
Middle East
United States
Worldwide Updates
Check to state you have read and
agree to our Terms and Conditions

Terms & Conditions and Privacy Statement (the Website) is owned and managed by Mondaq Ltd and as a user you are granted a non-exclusive, revocable license to access the Website under its terms and conditions of use. Your use of the Website constitutes your agreement to the following terms and conditions of use. Mondaq Ltd may terminate your use of the Website if you are in breach of these terms and conditions or if Mondaq Ltd decides to terminate your license of use for whatever reason.

Use of

You may use the Website but are required to register as a user if you wish to read the full text of the content and articles available (the Content). You may not modify, publish, transmit, transfer or sell, reproduce, create derivative works from, distribute, perform, link, display, or in any way exploit any of the Content, in whole or in part, except as expressly permitted in these terms & conditions or with the prior written consent of Mondaq Ltd. You may not use electronic or other means to extract details or information about’s content, users or contributors in order to offer them any services or products which compete directly or indirectly with Mondaq Ltd’s services and products.


Mondaq Ltd and/or its respective suppliers make no representations about the suitability of the information contained in the documents and related graphics published on this server for any purpose. All such documents and related graphics are provided "as is" without warranty of any kind. Mondaq Ltd and/or its respective suppliers hereby disclaim all warranties and conditions with regard to this information, including all implied warranties and conditions of merchantability, fitness for a particular purpose, title and non-infringement. In no event shall Mondaq Ltd and/or its respective suppliers be liable for any special, indirect or consequential damages or any damages whatsoever resulting from loss of use, data or profits, whether in an action of contract, negligence or other tortious action, arising out of or in connection with the use or performance of information available from this server.

The documents and related graphics published on this server could include technical inaccuracies or typographical errors. Changes are periodically added to the information herein. Mondaq Ltd and/or its respective suppliers may make improvements and/or changes in the product(s) and/or the program(s) described herein at any time.


Mondaq Ltd requires you to register and provide information that personally identifies you, including what sort of information you are interested in, for three primary purposes:

  • To allow you to personalize the Mondaq websites you are visiting.
  • To enable features such as password reminder, newsletter alerts, email a colleague, and linking from Mondaq (and its affiliate sites) to your website.
  • To produce demographic feedback for our information providers who provide information free for your use.

Mondaq (and its affiliate sites) do not sell or provide your details to third parties other than information providers. The reason we provide our information providers with this information is so that they can measure the response their articles are receiving and provide you with information about their products and services.

If you do not want us to provide your name and email address you may opt out by clicking here .

If you do not wish to receive any future announcements of products and services offered by Mondaq by clicking here .

Information Collection and Use

We require site users to register with Mondaq (and its affiliate sites) to view the free information on the site. We also collect information from our users at several different points on the websites: this is so that we can customise the sites according to individual usage, provide 'session-aware' functionality, and ensure that content is acquired and developed appropriately. This gives us an overall picture of our user profiles, which in turn shows to our Editorial Contributors the type of person they are reaching by posting articles on Mondaq (and its affiliate sites) – meaning more free content for registered users.

We are only able to provide the material on the Mondaq (and its affiliate sites) site free to site visitors because we can pass on information about the pages that users are viewing and the personal information users provide to us (e.g. email addresses) to reputable contributing firms such as law firms who author those pages. We do not sell or rent information to anyone else other than the authors of those pages, who may change from time to time. Should you wish us not to disclose your details to any of these parties, please tick the box above or tick the box marked "Opt out of Registration Information Disclosure" on the Your Profile page. We and our author organisations may only contact you via email or other means if you allow us to do so. Users can opt out of contact when they register on the site, or send an email to with “no disclosure” in the subject heading

Mondaq News Alerts

In order to receive Mondaq News Alerts, users have to complete a separate registration form. This is a personalised service where users choose regions and topics of interest and we send it only to those users who have requested it. Users can stop receiving these Alerts by going to the Mondaq News Alerts page and deselecting all interest areas. In the same way users can amend their personal preferences to add or remove subject areas.


A cookie is a small text file written to a user’s hard drive that contains an identifying user number. The cookies do not contain any personal information about users. We use the cookie so users do not have to log in every time they use the service and the cookie will automatically expire if you do not visit the Mondaq website (or its affiliate sites) for 12 months. We also use the cookie to personalise a user's experience of the site (for example to show information specific to a user's region). As the Mondaq sites are fully personalised and cookies are essential to its core technology the site will function unpredictably with browsers that do not support cookies - or where cookies are disabled (in these circumstances we advise you to attempt to locate the information you require elsewhere on the web). However if you are concerned about the presence of a Mondaq cookie on your machine you can also choose to expire the cookie immediately (remove it) by selecting the 'Log Off' menu option as the last thing you do when you use the site.

Some of our business partners may use cookies on our site (for example, advertisers). However, we have no access to or control over these cookies and we are not aware of any at present that do so.

Log Files

We use IP addresses to analyse trends, administer the site, track movement, and gather broad demographic information for aggregate use. IP addresses are not linked to personally identifiable information.


This web site contains links to other sites. Please be aware that Mondaq (or its affiliate sites) are not responsible for the privacy practices of such other sites. We encourage our users to be aware when they leave our site and to read the privacy statements of these third party sites. This privacy statement applies solely to information collected by this Web site.

Surveys & Contests

From time-to-time our site requests information from users via surveys or contests. Participation in these surveys or contests is completely voluntary and the user therefore has a choice whether or not to disclose any information requested. Information requested may include contact information (such as name and delivery address), and demographic information (such as postcode, age level). Contact information will be used to notify the winners and award prizes. Survey information will be used for purposes of monitoring or improving the functionality of the site.


If a user elects to use our referral service for informing a friend about our site, we ask them for the friend’s name and email address. Mondaq stores this information and may contact the friend to invite them to register with Mondaq, but they will not be contacted more than once. The friend may contact Mondaq to request the removal of this information from our database.


This website takes every reasonable precaution to protect our users’ information. When users submit sensitive information via the website, your information is protected using firewalls and other security technology. If you have any questions about the security at our website, you can send an email to

Correcting/Updating Personal Information

If a user’s personally identifiable information changes (such as postcode), or if a user no longer desires our service, we will endeavour to provide a way to correct, update or remove that user’s personal data provided to us. This can usually be done at the “Your Profile” page or by sending an email to

Notification of Changes

If we decide to change our Terms & Conditions or Privacy Policy, we will post those changes on our site so our users are always aware of what information we collect, how we use it, and under what circumstances, if any, we disclose it. If at any point we decide to use personally identifiable information in a manner different from that stated at the time it was collected, we will notify users by way of an email. Users will have a choice as to whether or not we use their information in this different manner. We will use information in accordance with the privacy policy under which the information was collected.

How to contact Mondaq

You can contact us with comments or queries at

If for some reason you believe Mondaq Ltd. has not adhered to these principles, please notify us by e-mail at and we will use commercially reasonable efforts to determine and correct the problem promptly.