© Copyright 2019 Grief Probate Journey Blog *PLEASE NOTE THIS INFORMATION IS SOURCED FROM Compassion in Dying website as well as a UK website. It is also based on our own personal experience. *We are not experts in these fields, we are speaking purely on our own experience with information sought from the internet and direct from Compassion in Dying website.
Please see: Talk to your loved ones which covers:
- Introduction/Our Story
- Background Story
- Illustrative examples: Compassion in Dying
- YouTube videos: Compassion in Dying
- Coronavirus: Doctors urge conversations about dying
- Coronavirus: Talks ongoing over Wills witness requirements
- Compassion in Dying (Home Page)
- Compassion in Dying Home page sub-sections
- Compassion in Dying Footer menu sections
- Examples of resources available through Compassion in Dying
- Compassion in Dying contact information
- Our Final Thoughts
1. Introduction/Our story:
This topic became an idea by chance. I had been sent a job application by a friend as they thought I might have been interested in the job. The company is called Compassion in Dying.
As soon as I took a look at the job description, I got a feeling inside, the role spoke to me in so many ways and this is why I decided to apply for it. The main reason why I felt such a strong connection to the role is because of the care I gave to our Dad in the seven months whilst he was a patient in the hospital. I also felt a strong connection as this is such a great service. To be in control of how your end of life could be is such a priceless thing. When we say this we mean, if by unfortunate circumstance you might find yourself not in sound mind (Dementia, Delirium as an example. We also have a topic on Delirium), you would not be deemed fit to make certain decisions regarding your medical care.
I wasn’t successful in the interview for the role, but as we are so encouraged and passionate about the service they offer, we asked if we could include them in our blog, and thankfully they said yes. And this is where the idea of where this topic began. we had both made the decision that whether I got this job or not, we would ask that we could include them in the blog somehow. This is vital information that we believe people need to be made aware of. We were not sure how we would go about doing this. But we were delighted when they said they would be pleased to be featured in our blog.
2. Background story:
After seeing that doctors are now encouraging people to talk about dying, making wills due to coronavirus pandemic (We have a topic on Coronavirus). We thought, this is how we will make this become a topic. If this is something that families will be talking about, end of life planning is equally important.
The difference between having a possible traumatic/stressful end because you might feel like you have no control over what is happening to you, in comparison to things being within your control with you having a say and feel involved in the process is priceless. Having experienced everything, we did with our Dad whilst he was in the hospital, we would encourage people to consider their wishes in the here and now in case you find yourself needing medical care/assistance, and also make this be known.
Through the services compassion in dying offer, should you wish to complete an Advanced Decision (Living Will) the choices you make (within the specified requirements) will be legally binding, and medical professionals will need to respect and abide by these wishes. We really wish we had been aware of this service when our Dad was in the hospital, as it could have made such a difference to the care he received.
“Advance Decisions are legally binding in England and Wales, as long as they meet certain requirements. This means that if a healthcare professional knows you’ve made an Advance Decision, they have to follow it. If they ignore an Advance Decision then they could be taken to court”.
I am just realising what we are saying as I am typing. This would not be an easy thing to do, having such a conversation, and this is speaking from the first-hand experience of trying to get our Dad to agree temporarily to Lasting power of attorney. This was for his property and financial affairs. It was the hospital that advised us we needed to apply for this as soon as possible. We were advised against the Health and Welfare Power of Attorney. (We also have a topic on Power of Attorney). It’s also not an easy decision to think about the possibility of being in ill health, but then to take that one step further and write down your wishes in advance of this possibility is even harder. But we hope in light of what is happening now that this would be looked at more.
The difference between Advance Decision (Living will) and Health and Welfare Power of Attorney is that with Power of Attorney you are assigning someone that you trust to make decisions on your behalf in case you later become unable to make decisions for yourself. An Advanced Decision (Living Will) allows you to write down any treatments that you don’t want to have in the future, in case you later become unable to make or communciate decisions for yourself. (Compassion in Dying can also assist you with Health and Welfare Power of Attorney if you feel this is a better option for you).
What we have learnt through our Dad being hospitalised is that when you are ill and hospitalised you can feel stripped of many things:
- Your independence
- Your dignity
- Your Freedom
- Your Rights
Mentally and physically the difference knowing that you have set these plans in place could bring great peace of mind. Decisions about your life and your wishes should in no way be taken lightly or for granted.
Unfortunately, in our situation, by the time we got our Dad to agree to the Power of Attorney and get the forms signed (fingerprint as he lost his sight due to Infective Endocarditis) and sent off, it was all too late as he sadly passed away before the application was processed. Power of Attorney forms are not able to be fast-tracked in priority of the stage of life people are in. This is why although it would be a difficult conversation to have, it’s best this is done before someone gets ill. This is why we now always would encourage people to talk to their loved ones in the here and now while something can be done and set in stone. We have a topic on Taboo and Grief where we are trying to encourage people to talk to their loved ones whilst they are still here. (We also have a topic on Infective Endocarditis, and will be doing a topic on blindness and Infective Endocarditis as it is not covered in the topic).
This is a sensitive matter, and subject, and as I’m typing, I’m realising what we are suggesting, but we are coming from an angle, of how things turn out if things like this were not in place. By far, this is a much better option for the person, and also for the family and support system. We hope this topic will be of use to at least one person. If that could be so, then this was worthit.
Please see: Talk to your loved ones in the here and now: Planning your Health Care
3. Illustrative examples: Compassion in Dying
4. YouTube videos: Compassion in dying
4.1. Brenda: My Mum’s Advance Decision
4.2. Brenda’s Story: Advance Decision
4.3. Brenda: Talking to my friends about my Advance Decision
“Palliative care doctors are urging people to have a conversation about what they would want if they, or their loved ones, became seriously unwell with coronavirus”.
Before this pandemic, throughout our blog we have been encouraging this conversation to happen, although we were encouraging it regarding wills, plans that are in place, assets owned etc (which is covered in more detail in our topics on Probate, and Inheritance Tax). Now that we are aware of this service through Compassion in dying, we would highly recommend the services offered by this organisation.
“A major overhaul of probate legislation is on the agenda, as the government urgently looks to change requirements around witnessing wills in the wake of the coronavirus outbreak“.
“Helping you prepare for the end of life. How to talk about it, plan for it, and record your wishes”.
8. Compassion in Dying home page sub-sections
The home page has sub-sections as follows:
Plan your care This section covers:
“Everyone will have to make a decision about their health or care at some point in their lives. Some people will be able to make their own decisions throughout their life. Others might, at some point, lose the ability to decide for themselves.
“The information in this section aims to help you understand your rights to make decisions about your health and care. It explains how to make treatment and care decisions if you have the capacity to do so, and what happens if you can no longer make decisions for yourself. It also includes information about how to plan ahead to ensure your wishes for treatment and care are followed at the end of life”.
“In this section, you can view and download all of our factsheets, research and publications free of charge. To find what you need, click on the categories and topics on the right hand side or type into the search box”.
This section details the various services Compassion in Dying offers
8.4 About us:
This section has a Who we are section as well as a drop-down menu with other information such as:
- Work for us
- Annual reports
- Contact us
8.5 Support us:
This section has details on how you can support the charity.
“This practical guide includes the information you need to understand how treatment and care decisions are made, how you can plan ahead to ensure you stay in control of these decisions, and who to talk to and share your wishes with”.
9. Compassion in Dying footer menu information:
“This booklet aims to support you to talk about your wishes for care and treatment with your family, friends and doctor”.
“Following research with more than 600 people living with a terminal illness or caring for someone at the end of life, What now? is designed to help people find the information they need and ask questions, so that they can make informed decisions about their treatment and care – helping them to live well in the time they have left. What now? will be a helpful resource for health and care professionals working in a range of settings, as well as people living with terminal or life-changing illness and their families”.
10. Examples of the resources available through Compassion in Dying:
“This Advance Decision (Living Will) pack contains an Advance Decision form and comprehensive guidance notes explaining everything you need to know to complete it”.
The pack includes:
Advance Decision to Refuse Treatment
“This form sets out the situations in which you want to refuse medical treatment if you are unable to make or communicate that decision in the future”.
“This gives information to help you complete your form. The notes explain when an Advance Decision would be used and offers support to consider your wishes”.
Answers questions regarding your treatment and care such as:
- What happens if I can’t make decisions about my treatment and care
- Planning ahead, making my treatment and care wishes known
- Making treatment and care decisions on someone else’s behalf
- Getting care at end of life which includes:
- Care at home
- Care homes
- Hospice care
- Hospital care
“My Life, My Decision was an ambitious, multifaceted programme of work aiming was to support people aged over 50 to think about and plan their care in advance, helping to ensure they have the death that is right for them. The programme tried and tested new ways of engaging people and communities in planning for the end of life. It developed a service that placed the individual at the centre of their care decisions and supported them to express and record their wishes in a legally binding way”.
11. Compassion in Dying Contact Information
If you have questions about your end-of-life rights, end-of-life care, Advance Decisions or Lasting Powers of Attorney, you can contact us on our Information Line.
Phone: 0800 999 2434 Email: firstname.lastname@example.org
Available 11am to 3pm, Monday to Friday
12. Our Final Thoughts:
It’s extremely trying times at the moment, uncertain times worldwide. The unified support being shown is amazing. Being uplifted in times of isolation is beneficial in so many ways.
However, the sad reality is that people are sadly losing their life to this virus worldwide. It is daunting and distressting times for many people.
We feel, by having the choice of your healthcare decision and knowing that you have taken control of this may help to ease some of the uncertainties during this period of such unknown times.
We hope this will be of use to someone in some way, and we wish anyone reading this a great day, week, weekend.