If you or someone you love has been diagnosed with a terminal illness, how do you plan for the best death possible? In April 2008 Sarah Winch's husband, Lincoln, died from kidney cancer that was diagnosed only four months earlier. He was 48. Sarah and Lincoln prepared as best they could for his death. Her 30 years as a registered nurse and ethicist, specifically focused on end-of-life care, did not fully prepare Sarah for Lincoln's death, but it did help them plan for the best death possible. This book advocates for taking control of the final stages of life. It opens up the conversation around death and encourages us to become more informed about how we want to die. This is an intimate, compassionate and practical guide, from someone with uniquely relevant personal and professional experience.
|Publisher:||University of Queensland Press|
|Product dimensions:||5.00(w) x 7.75(h) x 0.50(d)|
About the Author
Dr Sarah Winch is head of the Medical Ethics, Law and Professionalism discipline at the Faculty of Medicine, University of Queensland. She is also the CEO of Health Ethics Australia, a charity that aims to improve death literacy for everyone and compassion awareness for clinicians. She teaches healthcare ethics and researches end-of-life care. Sarah's professional health ethics advice is sought nationally and internationally by clinicians and government agencies. A widely published author, she draws on her expertise and experiences in end-of-life healthcare to help others get the best death possible.
Read an Excerpt
are you living the last 12 months of your life?
Understanding bad news
Like us, when you first hear the diagnosis of 'no cure', you are likely to experience numbness and disbelief. That may be where you are at right now. When we received our news, Lincoln actually pinched me in case he was dreaming. When I yelped and glared at him, he abandoned that strategy. Perhaps you think: 'I can live with no cure, as long as I can put off death for a while.' This may be the case, but what does it mean for managing the end of your life or that of your loved one? How can you get the best death possible when you are finding it hard to believe that your death is going to be sooner than expected?
Many people put thoughts of death out of their mind. A common refrain is: 'Why worry about dying when I could be hit by a bus and be gone tomorrow?' While some experience sudden death, most people do not. They actually see the bus approaching that is going to hit them some time in the coming weeks or months. Death is never easy but there are advantages in knowing it is on its way. You can put your 'house in order', complete your bucket list, and reflect on how you have lived your life and on what your death should be like.
To start this process you can:
take steps to believe the news
tell others and learn how to manage their reactions
do some simple research
understand the difference between diagnosis, prognosis and the experience of illness.
Believing bad news
Believing a diagnosis of 'no cure' can be very difficult. This is true if you have just found out about your illness or if you have been receiving treatment for a while and were hoping for a cure. Some people do not want to be told. For others, the truth is a relief, confirming what they have felt for some time. Ideally, your healthcare team will break the news in stages, gently, so the person who is receiving the news can assimilate what they are being told. Most probably, they will repeat it several times. They will need to. In the meantime, if you are having trouble moving out of the dream state of unbelief, the following techniques may help.
Techniques to help you believe bad news
1. If possible, take a relative or friend to your medical appointment. They can confirm what you think the doctor is saying and support you afterwards. Try not to pinch them – they will probably be in shock as well.
2. Repeat back to the doctor or nurse what they have told you. Our conversations with the doctor went like this: 'So Lincoln has kidney cancer that has spread all through his body and there is no treatment? Is that what you are saying?' The doctor confirmed this. We repeated: 'There is no treatment available, no chemotherapy or radiotherapy?' He agreed this was the case.
3. Write down information and check the waiting room for leaflets or fact sheets relevant to your situation.
4. Read your notes and your information several times and try to absorb the meaning.
5. Write down any questions.
6. At your next visit confirm what the doctor has told you and ask your questions.
7. Ask the doctor if you can record their responses. This may not be permitted by some doctors but it is worth asking. If you do get permission, many smart phones have this capability. An old-fashioned tape recorder will also do the job. This will help you as you can replay the recording at your convenience.
8. Understanding is complicated further if English is not your first language. This is because in times of stress your ability to understand and communicate may falter. In this case request an interpreter. If one is not available take a support person who is fluent in both languages to your next visit so that communication can proceed as smoothly as possible.
9. You may like to do some research. The internet is a great source of information but not all of it is accurate. Anyone can post information that may or may not be true. Despite this, I believe the good outweighs the bad. There are reputable sites maintained by major health institutions, governments or organisations that represent people who have a particular disease; for example, the Cancer Council or Alzheimer's Australia. If you find information that concerns you, discuss it with your doctor or nursing team.
10. If you are the carer or support person, allow the dying person some time on their own to deal with their feelings. Understandably, there is a lot of emotion to process as well as information to absorb. Sometimes being on your own helps (both for you and the carer).
11. Start acting on the information even if it feels unreal. Develop short-term goals. These can be simple things like getting legal matters sorted, organising a power of attorney or writing your will.
12. If your condition permits, take some light exercise, such as walking.
13. Importantly, try to do as much as possible, for as long as you can. A diagnosis of 'incurable' or 'terminal illness' does not mean that you are dying tomorrow. Life is still for living – even more so in these situations.
If you are not sure about your situation, but you suspect your condition is terminal, ask your doctor or nurse the following question:
Do you think I will be alive in twelve months?
This gives your healthcare team scope to acknowledge and discuss what they may be thinking. It opens up a conversation that moves from living with an illness to living the last twelve months of your life.
While this is confronting and devastating, it does mean you have time to put a number of things in action. Some need to be done more quickly than others, but we will get to those shortly. Some may be things that you want to do at a personal level – your bucket list. These are things you want to do before you 'kick' the bucket, so to speak. Lincoln had a 'reverse bucket list' – things he never wanted to do again, including going back to work!
Telling others and managing reactions
Once you are sure about your information you may want to tell others. This can be exhausting. We wanted to keep people informed but hated repeating the story over and over again. Here are some tips to help you communicate with friends and family.
Tips for telling others
1. Keep people informed to the extent you think is manageable. The time you have left is now yours to spend wisely. You may not want to talk on the phone all evening, reporting the latest test results to friends and family. Explain this to them.
2. Keep the message simple and repeat it.
3. Nominate a trusted 'official messenger' who can relay the news to others on your behalf.
4. Accept that friends may be sad and emotional, but let them deal with it in their own way.
5. Accept offers of help and care from others. You will need it.
6. Do not accept blame or poor behaviour from others. One message conveyed to me was: 'Sarah was a nurse – why didn't she pick up on Lincoln's cancer?' This type of interaction is truly not helpful and you should ignore it, like I did!
If this is a new diagnosis you will probably want to use the internet to find out as much as you can. Despite being the director of a research unit in a large Queensland hospital, I did not use the hospital computers to look up the medical literature regarding kidney cancer. I was very tempted but decided to trust our doctor and leave the cancer medicine to him. I knew he had an excellent reputation. However, I did want to know what was likely to happen at a personal level, and what we needed to plan for, and for that I used the internet.
The Google queen
Google is a wonderful search engine for all sorts of things, including end-of-life care and decision making. When I type in 'end of life care' as a search term, I get over nine million responses in half a second. There is a huge amount of information on the internet. One of the most important websites for you to look at is maintained by Palliative Care Australia (see Appendix 2). Click through the different sections that apply to you. There are also many printed brochures available to help you understand all aspects of palliative care.
I found patient blogs interesting. These are patients' stories about their treatments that can be found on the internet. Just after Lincoln was diagnosed he was offered a drug that had been approved for use but was not subsidised in Australia at that time. The drug information listed what appeared to be every known side effect in medicine. It left us totally confused. I decided to check patients' experiences from taking this drug in other countries, as described by them in their blogs. They were 'warts and all' stories but gave us a good idea of what we could possibly expect and some of them did identify the same side effects that Lincoln experienced.
Understanding the language
Lincoln was diagnosed only a short time before he died but he had advantages over some people who become suddenly terminally ill. He had me! Or more precisely, my knowledge of the healthcare system and a basic understanding of the treatment of cancer, including the language used. If you are unsure about the medical terms being used, ask your doctor to explain them to you. If you need more help, MedicineNet has a useful dictionary called MedTerms or you may like to try the Medical Dictionary (see Appendix 2). Type in what you want to know and the answer will be provided. These cannot replace the advice of your doctor or others in the treating team but may help you understand more when you are discussing your treatment with them.
If you do not have internet access, a friend or family member may be able to help you. Most local libraries in Australia also have computers where you can access the internet and classes to help you get started. These are popular. You may need to book a time at your local library.
Your diagnosis or diagnoses are important terms that tell you what is going wrong with your body and what to expect in terms of how you will manage your disease. Sometimes your treating team will not know exactly how things started and sometimes this accuracy doesn't matter. For example, Lincoln's diagnosis was kidney cancer that had spread through his body to his liver, lungs, spleen and brain. He did not have an operation to biopsy his kidney to prove this was the case. Instead, his oncologist looked at his scans and decided it most likely started in his kidney and spread to the other affected organs. The way the cancer had spread indicated to him that Lincoln's kidney was most likely the place of origin. Therefore, a biopsy was not necessary. It would not have changed the outcome for Lincoln or his treatment and it may have been uncomfortable and unpleasant.
Your prognosis tells you how your illness is likely to progress. Most diseases are classified by stages. Knowing what stage you are at can provide information about how long you are likely to live, how you may die and what effect treatments may have on your survival time. 'Prognostic factors' tell you more about your prognosis and can be characteristics, such as age or other conditions. For example, a younger person who has the same illness as an older person may survive for longer because youth is on their side. Or a person with the same disease at the same stage may have other conditions that will shorten their survival time.
Lincoln was given a diagnosis of 'Renal Cancer Stage 4'. This meant the cancer had spread from his kidney to three other sites. There is no 'Stage 5' but given all the other places his cancer had spread to, he would have been a 'Stage 10' if they had gone that far. According to the statistics at the time of Lincoln's diagnosis, twenty per cent of these patients live for five years. Unfortunately, Lincoln would not have survived for that length of time because of other prognostic factors. His cancer had spread to four areas in his brain; one of these was just above the part that controlled breathing. These patients, like Lincoln, only have a five per cent chance of surviving twelve months. This means that ninety-five per cent of these patients are likely to die within twelve months.
Each case and disease is different. Your doctor will take all these factors into account and try to predict what will happen in your case. These predictions are based on years of medical research and experience, but can only be used as a guide. They cannot provide an exact time when death will occur.
Many doctors use statistics to help you understand what will happen. This is particularly true with a cancer diagnosis. You should be told about survival rates. If you are not given this information, and you want to know, then ask! The five-year survival rate refers to the percentage of people living five years from diagnosis, with the same grade and stage of disease. These figures can guide your future planning, such as applying for payouts of superannuation and life insurance or taking an overseas holiday.
Experience versus statistics
While statistics can tell you the likelihood of an event, such as approximate survival times, they cannot tell you how you will experience this process. In this I am reminded of the term 'qualia'. It refers to how we as individuals experience things at a personal level. We know people perceive pain, temperature and sensation in general, differently. Complex interactions between how your body works, your emotions, your upbringing and your cultural background will affect your experience of disease at a personal level. Although we may have a general idea about what being ill is like, it is difficult to predict how you will experience your end-of-life symptoms as an individual.
There are differences between what we think a person is experiencing compared to what they know they are feeling. This may be a factor in cases where your family would like to continue treatment but you would like to stop. Or when treating teams think one last treatment should be tried. Their intentions are often honourable, but they may be forgetting that your experience of these treatments and side effects is yours alone. Your response to treatments and side effects is your own unique experience. This means you need to make the decisions on your treatment and how to manage the side effects. Others cannot understand what you are going through except in a general sense. A starting point for me is to find out what the dying person wants and the reason for their decision.
Sometimes the dying person will talk to their carer to get support in decision making. Mac, a 75 year old man with a terminal illness, wanted to stop an experimental treatment. It had extended his life for eight months but had some very unpleasant side effects. Mac knew if he stopped the treatment his life would end in a matter of weeks. His doctor was reluctant to stop providing the treatment because despite the terrible side effects, it was working. Mac did not want to upset the doctor who had helped him access the experimental treatment in the first place, without which he would have died several months ago, but he still wanted to stop the treatment. Concerned his message was not getting through, he asked his daughter Liz to intervene. She asked me the best way to handle this situation. I referred her to myRefusing active treatment decision-making guide (see Chapter 3). Liz met with the doctor and Mac stopped the treatment. While there is absolutely no doubt his survival time was shortened, his quality of life (as he perceived it) improved. He died peacefully several weeks after his decision.
Seeing the bus that is going to hit you and end your life can make you do strange things, including pinching a beloved spouse in broad daylight to make sure you are not dreaming. If they clobber you back, you know it is for real. You know now there are less threatening ways to start believing this most devastating and catastrophic news. I have also explained how to work out what your timeline is broadly likely to be or when that bus may come along. The news you have is awful but you are not alone in this situation. You have a treating team and, I hope, some personal support. They can help you plan for the best death possible.
Excerpted from "The Best Death"
Copyright © 2017 Sarah Winch.
Excerpted by permission of University of Queensland Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
How it all began,
How to use this book,
CHAPTER 1 Are you living the last 12 months of your life?,
CHAPTER 2 Getting the support you need,
CHAPTER 3 Developing a plan for a good death,
CHAPTER 4 The legalities,
CHAPTER 5 Dying 101,
CHAPTER 6 Troubleshooting,
CHAPTER 7 Reflections on grief,
APPENDIX 1 Nursing hierarchies,
APPENDIX 2 Useful websites and phone numbers,