Preparing for End of Life
Preparing someone for the end of their life
The only certainly about life is that it will end at some time. We have no control over how we are called from this Earth – it can happen all too suddenly and prematurely. By contrast, we could be fortunate enough to experience happy, healthy and long lives which continue up to or beyond the age of life expectancy.
However, death from a terminal illness can be a long time in the making and feel quite traumatic, as it’s something you would anticipate from when the terminal illness is diagnosed. At least if this is how your life comes to an end, you can prepare yourself for how your final days on Earth will be spent and say a heartfelt goodbye to your loved ones, having had time to gather your thoughts on what to tell them.
The subject is not an easy one to broach, though. The mere mention of it will invariably prompt discomfort and sadness, but it is not a subject that can be avoided. It can feel a little less uncomfortable to discuss when the person has enjoyed a long life and is diagnosed with a terminal illness. It is best to raise the subject in a positive way, for instance by saying “How would you like to spend the rest of your days?” rather than “Is there anything you want to do before you pass on?”. Keeping the focus on the here-and-now instead of the future reminds the person that they still have life and can make the most of it.
Key questions to ask for end of life planning & care
The type of care that you will receive in the final days and weeks of your life will depend on your preferences and what is best for you. Whatever choice is made, though, it’s important to maintain your quality of life insofar as possible until you die and there are several key questions you should ask about end-of-life care before deciding upon a care option:
1. What will happen next with the illness getting steadily worse?
2. Why is this treatment ideal?
3. Will this treatment provide physical comfort?
4. Will this treatment accelerate or slow down the dying process?
5. What can I expect to happen over the coming days and weeks?
6. By availing of this treatment or participating in this clinical trial, will it later prove beneficial to others in the same situation?
Selecting an end-of-life care option begins with knowing what you want, whether that is to spend your final days in the comfort of home surrounded by family and close friends, or to simply be left alone.
It can also happen that your wishes change over time. You might initially want to do everything possible to prolong life and decide later to live your final few days in comfort. Maybe you don’t want treatment at first but you might later opt for an experimental therapy if it will benefit others who find themselves in the same situation in future.
How to create a healthy end-of-life environment
Being surrounded by a healthy, comfortable environment in the final days and weeks of life will make this difficult period slightly easier to endure. It’s best to think about the settings and circumstances that provide comfort for you and ensure that you have these to draw upon during end-of-life care.
1. Be with those about whom you care the most: Having family and lifelong friends by your side in your final days can be very comforting. They don’t need to be there 24/7, but having a steady flow of visitors will be greatly cherished. Alternatively, you could have a much-loved pet near you.
2. Allow yourself some privacy: Although you may wish to seize upon every bit of time you can possibly get with your loved ones, you need a degree of privacy and alone time also. A calm, peaceful environment will help you to cope with significant physical and mental changes, while it will enable you to relax in between family and friends’ visits. Indeed, some people might prefer to be left alone insofar as possible in their final days.
3. Draw upon familiar comforts: Many people choose to spend their final days at home, as this is where they are happiest and it feels more relaxing than a hospital or care home environment.
4. Have access to the care you need: Wherever you choose to spend your final days and weeks, you’ll need to have access to the best in medical and palliative care. It’s likely, too, that you’ll require round-the-clock care. Provision of such care will put you and your family at ease.
5. Unleash your thoughts and feelings: When you know that death is imminent, you’re bound to experience very strong emotions, and keeping these bottled up can be a massive strain. Even if you’re not an expressive person, allow yourself time and space to let your emotions out, whether it’s through meditation, writing down how you feel or talking at length to family and close friends, or maybe a counsellor – whatever approach feels easiest for you.
6. Seek spiritual care: You might be a very religious person or don’t profess to any faith, but it’s often helpful to lean upon spiritual support, as this will help you to dig deep into life’s biggest questions with someone who understands such dilemmas. It’s very common for a priest to visit in your final days and provide reassuring guidance on spiritual matters.
Palliative care physician BJ Miller talks deeply about what matters most to people at the end of their lives.
What to expect in the final few days of life – end of life symptoms
Every person will have their own preferences for the final days of their life, while death could come much quicker for some people than others, so it can be difficult to accurately anticipate what will happen when death draws near. There are some physical and mental signs, though, that life could be about to come to an end.
1. Severe loss of weight: Your muscle strength decreases sharply and your body might become very thin.
2. Extreme fatigue: You might feel that you need to be in a bed or a comfortable chair almost all the time and you find yourself sleeping much more than normal. Tasks such as eating, washing and going to the toilet, which seemed so natural before, could become difficult.
3. Body temperature variances: Your body might find it hard to regulate temperature ideally, so you could fluctuate from feeling too hot to too cold and vice versa in a short space of time.
4. Dramatic loss of appetite: You rarely feel like eating and, even when you do, you could find swallowing difficult. It’s also likely that your taste buds will have diminished, or that you’re eating at different times every day.
5. Bladder/bowel problems: You might have difficulty with controlling your bladder and bowels, but an experienced, compassionate carer will help you to maintain your comfort and dignity if you feel constipation.
6. Breathing difficulties: You might encounter some respiratory difficulties, especially if you feel quite anxious, but there is medication that you can take to help, while opening a window or switching on a fan might also be beneficial.
7. Loss of focus: You might find it very hard to concentrate and you could become highly confused and disoriented with the environment around you.
8. Extreme calm or agitation: You could either become serenely detached from everything around you and become quite insular, or you could be highly agitated and require frequent reassurance to help you through.
9. Delirium: You could become delirious and begin saying things that make no sense to people around you. Delirium could also take the form of seeing or hearing things that aren’t there.
Make sure your life is complete
Some topics might seem difficult to face in the final days of your life, but by taking them on, you will most likely be comforted in knowing that you’ve done all you can to provide some form of solace to the people closest to you. It’s worth doing some of these while you still have the opportunity:
1. Speak from the heart about your loved ones: Expressing what your loved ones mean to you is bound to be highly emotional, but telling them from the heart will leave you with no regrets and will allow them to draw solace from your words in the weeks and months after you’ve died.
2. Sort out your personal affairs: If you still have the mental capacity to do so, organise your financial and legal affairs (e.g. insurance policies, bank statements) so that this is neatly arranged for your family to take over after you’ve died. It’s also beneficial for spending time together as a family and the practicalities of the paperwork could detract from the emotional trauma that you and your family are experiencing.
3. Set out your funeral wishes: Whether it’s a song you want played, a resting place where you’d like to be kept or any specific memorial request, this is your chance to inform your family of any wishes you have for your funeral.
4. Celebrate your life: There will be enough sadness around this time, so it will help everyone to reflect upon the joyful moments of your life. Talking to loved ones about your happiest memories will bring a smile to you and them, while it’s a good chance to share heirlooms with very young relatives whose future memories of you might be minimal or zero.