The end of life journey is full of challenges for both the person with terminal illness and the people around them. If navigated well, it can be a deeply meaningful, love-filled and life-changing journey.
To start off, I would like to share an article written by Dr Karen J Warren, a former Professor and Chair of Philosophy at Macalester College, Minnesota. Dr Warren passed away in August 2020 from Multiple System Atrophy.
Prior to her death, she shared about the challenges of coping with terminal illness and devoted her time and energy to advocating for people with untreatable fatal illnesses to have the right to choose their time of death.
Dr Warren chose to donate her body to the University of Minnesota Anatomy Bequest Program for medical education and research.
*In Singapore, people with terminal illness can choose to donate organs, parts of their body, or their whole body under the Medical (Therapy, Education and Research) Act (MTERA) and/or the Human Biomedical Research Act (HBRA). Both MTERA and HBRA are opt-in schemes. Organ and whole body donation are explored more in this post.
End of life can result in many physical changes that has a great impact on daily life:
1. Simple activities can become exhausting
If you have a terminal illness: Communicate frequently with the people around you to let them know your fatigue levels. Using a scale of 0-10 can help them better understand how severe the fatigue is. When people around you understand how you are feeling, they will be better able to find ways to meet your needs.
If you are caring for someone with terminal illness: Be mindful and patient. Modify activities according to their fatigue levels. For example, when they are feeling too tired to eat, stop the meal and let them rest. If the meal cannot be postponed because of an important reason (e.g. insulin has been served and the blood sugars are low), prioritise serving a fasting-acting carbohydrate drink instead of finishing the entire meal.
Consider renting/buying a wheelchair if walking is tiring or dangerous for the person you are caring for. This can allow them to enjoy changes in environment without having to use too much energy. A chair can also be placed in the bathroom to allow sitting during showering. Place frequently used items near the bedside so that they can be easily accessible.
Another option you can consider is getting a call bell (usually available at an affordable price from neighbourhood convenience stores) to be placed near the person you are caring for. Encourage them to use the call bell to get your attention if you are not within earshot (speaking can also be very tiring for them).
2. Food tastes terrible!!
Food preparation for people with terminal illnesses can be challenging. Not only is it difficult to flavour the food in a way that will be desirable for their altered taste sensations, certain conditions such as dementia can also impair their ability to swallow well. This will limit food options to solid food that are easier to chew and swallow and liquids with thicker consistencies.
If you have a terminal illness: it can be extremely frustrating that food doesn't taste right! You may want to do your best to eat as much nutritious food as you can to get the energy levels you need. However, if food tastes unpleasant, do not try to force yourself to finish the food especially if it causes nausea and vomiting.
Speak to your healthcare provider to get you connected with a dietician who can prescribe nutritional supplements in the form of protein powders or flavoured milk. Although these don't exactly taste amazing to everyone (I personally find them quite okay), they deliver most of the required nutrition in a smaller volume compared to a normal meal.
If you are caring for someone with terminal illness: I cannot emphasise how important it is not to cause pressure on someone to finish their meal. It will only cause more suffering for both parties while bringing very little benefit. The most important thing is to be adaptable and creative with food choices and to be undaunted in providing a variety of food even in the face of continued rejection. For example, if nasi lemak doesn't work today, then try chicken rice tomorrow, and briyani the following day.
Sometimes, the smell of certain types of food e.g. meat can trigger nausea and vomiting. Be sensitive to when such symptoms occur and try to avoid letting the smell permeate the air (close the kitchen door when cooking) or avoid that food completely.
However, do also note that the taste preferences can change rather quickly as well. Kway teow soup may taste bland today, but too salty the next day. Be very flexible.
3. Pain, Breathlessness, Nausea, and Poor-quality of sleep
If you have a terminal illness or if you are a carer: Dealing with these symptoms require good communication with the medical team. It would be useful to keep a logbook to record details of the symptoms to share with the medical team when they check in with you. This will help them to change the medications to more accurately match your needs.
Using the symptom of pain as an example:
Where is the location of the pain?
Describe the pain and its severity.
What time did the pain start?
How long did it last for before it went away?
Did you take medications to relieve the pain?
What time did you take the medications and what dosage did you take it at?
At any time the symptoms become unbearable and cannot be mediated with remedies that you have at home, you should contact your healthcare provider urgently.
4. Low Mood and Anxiety
If you have a terminal illness: Some people may experience very strong despair, hopelessness, and anxiety. Some people may become numbness and unable to feel. Wherever you are on the spectrum, it is normal to feel unlike your usual self. If you are having difficulty dealing with the emotions, consider writing them down:
How does the emotion make you feel? Does your heart feel tight? does it feel like you are drowning? Do you feel that life no longer holds any meaning?
What specific thoughts triggered the emotion? Are these thoughts recurring?
Are there any things that make you feel better?
If you are unable to resolve the issues on your own, voice out your concerns to someone you feel safe talking to. Do not suffer in silence! Often, there are ways to make things better, whether be it removing the triggers or lessening its impact, or finding other ways to achieve peace such as through counselling or meditation - sometimes, you just need another head to think it through with you.
If you are caring for someone with terminal illness: It can be difficult dealing with these issues alone. If you feel that the matter is something that you are not comfortable dealing with on your own e.g. suicidal thoughts, do voice it out to the medical team to get their assistance! Do not shoulder the burden on your own if you are not confident.
TLDR,
The end of life journey is challenging, but if navigated well, it can be a deeply meaningful, love-filled and life-changing journey if you open your heart and weather the obstacles together.