End-of-Life Care
Palliative care at end-of-life refers to whole-person-care that focus on the physical, emotional, social and spiritual needs of the persons approaching end of life, where a cure or reversal of the disease and its progress is no longer possible.
The purpose of palliative care is to improve the quality of life of the dying person including the relief of pain. As a caregiver, you should discuss palliative care options with the doctor, together with your loved one.
You can understand more about palliative care from the
Singapore Hospice Council or
LifeSG website. You can also enroll for training courses to manage the needs of your loved one, and
watch learning videos here.
The Conversation on Death
Beyond addressing the day-to-day care needs, the other challenge that caregivers face is approaching their loved ones on the topic of death. Dying is not only a deeply personal journey, but also a heavy-hearted experience for the family. Therefore, talking to your loved one about his/her death can be made harder if your family perceives it as a taboo topic.
Contrary to the myth, talking about death does not hasten the death process. Instead, it can help you and your loved ones better address the worries and fears related to the final days of their lives. Involve your loved one as much as possible in planning ahead so that you
get to know his/her values and care preferences. Planning will help you take into consideration the preferences of your loved one and to better decide their care arrangement when they no longer can do so. If you are uncertain about how to carry out such conversations with your loved one, these resources by the
Singapore Hospice Council or
AIC can serve as conversation starters.
Let your loved one share as much or as little as they wish. You can listen and ask more questions to clarify your understanding and to show interest. It usually takes more than one conversation for them to convey their thoughts so be patient and let them take their time. Encourage them to also share their past experiences and cherished memories. Conversations about death and dying are also about living well and what matters to your loved one.
The stress of seeing a loved one suffer can lead to heightened tensions among family members. Keep other family members informed on your loved one’s condition and wishes. Be open and honest when discussing the final care arrangement for your loved one so that family members can offer their help and share responsibilities. Seek help from the healthcare team should you need a social worker or counsellor to rally the support from other family members to care for your loved one.
For more tips on talking about dying, go to local websites of the
Singapore Hospice Council and
Grief Matters, and overseas website by
Dying Matters.
Pay Attention to Your Own Needs
Managing your emotions and responsibilities as a caregiver can become overwhelming. Do remember to take care of your own needs. Eat balanced meals and take time to rest. Reach out to others to ask for practical help and emotional support for yourself. Let the healthcare team know when you have difficulties coping with the demands of caregiving so that they can put in additional support for you.
You can find support from National Cancer Centre Singapore and HealthHub if you are caring for loved one living with cancer, and
resources on caregiving from the Singapore Hospice Council.
Here are some common reactions of a caregiver and suggestions to cope with them:
Common Reactions
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Examples
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Suggestions on Ways to Deal or Cope
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Worried or anxious
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What is going to happen? What if it's painful? What if something goes wrong?
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Plan the day. Keep to a schedule for routine activities. Have a list of persons you can contact for help and put the list in a place that you can refer to quickly. Take time to do deep breathing regularly. |
Doubtful/Disbelief
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Maybe the doctors are wrong. This cannot be happening.
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Write down your questions. Arrange for a time with the healthcare team so that you can clarify your doubts without rushing through them. Request for information to be repeated and given in a manner that help you to understand, e.g. ask for the explanation of medical terms you don’t know. |
Staying hopeful/not giving up
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"Maybe if I pray every day, she will get better." The head knows the facts but the heart is not ready to deal with the facts.
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Focus on what you can do to improve the quality of life for your loved one. Plan how to spend quality time with him/her. Help fulfil any wish that is within your effort. We never give up on our loved one, they matter to us right till the end.
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Dilemma
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"I wish his suffering will end quickly, but I also wish he could live for as long as possible."
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Recognise that you want the best for your loved one and also to keep the relationship with him/her for as long as possible. Work closely with the healthcare team to reduce physical and psychological suffering. Acknowledge that nature will take its own course. Even so, death cannot terminate your relationship with your loved one.
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Regrets/Guilt
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What if it is all my fault? I should have forced her to go for treatment earlier. |
We give advice to our loved one out of concern and to our best knowledge. However, we are unable to control the outcomes and the future. Ask for forgiveness from your loved one for not knowing better while recognising your good intention behind all the decisions made earlier.
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Cannot imagine a future without your loved one
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My dad is my best friend. What will I do without him? |
Make every moment counts and use whatever time you have to build memories with your loved one. Ask for a legacy of values that your loved one would like to pass to you.
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Numbness
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I do not know what to feel. I feel nothing. Maybe I am cold-hearted.
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Ask yourself, "Is this my usual reaction under stress?" Be kind to yourself. You may be so occupied with caregiving activities that you are trying to keep your emotions ‘under control’. It may be too painful to think about the impending death of your love one that you numb out your feelings. When you are not as overwhelmed, your senses and feelings will ‘come back’ again. |
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Injustice/anger |
Life is so unfair. Everyone is happy but me. Why should bad things happen to me and my loved one?
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Recognise that you might feel powerless for not being able to stop the impending death of your loved one. Remind yourself the reasons for you to take up the role as a caregiver.
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Caregiving does not have to become unbearable. When you are not coping with the demands of caregiving, reach out and seek help early. Let the people around you know. Ask to speak to a social worker or counsellor.
Identifying the Signs of Deterioration
The signs of deterioration in this write-up are general signs of a natural death. These signs may be different for each person. The end of a person's life can last for days, weeks or short months. Despite all the differences, you can help your loved one by being there for him/ her in these final days.
1. Significant Decrease in Activity
Your loved one may move and respond much less. He/ she may lose interest in everyday affairs or his surroundings. He/ she may not even be taking sips of water, lift his/ her head, nor shift in bed.
What can you do?
Keep your loved one resting in a comfortable position in a calm and peaceful environment.
2. Excessive Sleep
You may find that your loved one is sleeping a lot, or does not wake up easily.
What can you do?
Let your loved one sleep and if you have to, wake him/ her up gently.
3. Mental Confusion
Your loved one may be disoriented (confused). He/ she may imagine things, be confused about time and place, and talk to people who are not there.
What can you do?
Remain calm and accepting of your loved one, no matter what he/she may be experiencing. You may have to remind him / her of your name and your family members' names.
4. Social Changes
A person at the end of life can become more socially withdrawn, and may not want to talk to anyone. On the other hand, sometimes, people have a burst of energy in their last day.
What can you do?
Your presence counts even without much conversations . Treasure all moments with your loved one and be there for him/ her.
5. Loss of Appetite
Your loved one may not want to eat much.
What can you do?
Keep him/ her hydrated by letting him/ her suck slowly on a small ice cube if he/she is conscious, or use a warm damp cloth to moisten the lips. You can also apply lip balm to prevent dry skin. It is okay if your loved one does not want to eat much. Let him / her eat a comfortable amount. Do not force feed.
6. Decreasing body temperature
Because of decreasing blood circulation to hands and feet, your loved one's hand may feel cold when you touch it.
What can you do?
Place a warm blanket over him/her. Keep the blanket loose as it may cause uncomfortable weight on the legs. You can gently massage his/her hands and feet if that sensation gives comfort to him/her.
7. Changes in Urination
As the kidneys begin to fail, urine may become brownish, reddish, or tea-coloured. Your loved one may wet the bed or have little output.
What can you do?
Keep your loved one dry and clean. If you are at a hospice or hospital, the healthcare workers will help you maintain the basic hygiene of your loved one.
The Final Moments
In the final moments of a person's life, you will see some changes.
1. Breathing
Your loved one may breathe in a different way. Sometimes, he/ she may breathe very fast, or the interval between the exchange of air may appear longer. He/ she may breathe loudly because of fluid build-up in the lungs. Loud breathing is not uncommon and it might look uncomfortable.
What can you do?
You can ask for medication to dry out the fluids to lessen noisy breathing or coughing.
2. Body
The skin of your loved one may change colour and become dark or greyish. The beds of the fingernails may appear bluish. Ankles and feet might swell. He/ she may slip in and out of consciousness or go into a coma.
What can you do?
- If your loved one seems to be in pain, ask for medication to lessen the pain
- Keep their head up and support the neck
- Tilt the head or body to the side if that seems to help
- Moisten your loved one's mouth with a wet cloth or lip balm
- Keep calm and speak in a comforting voice
- Stroke your loved one's arm
Something to Remember
Even when a person seems to be unconscious, he/ she might still be able to hear you. Always behave as if your loved one can hear you, even when they seem like they cannot.
Your loved one may pass on when you are not by the bedside. Learn to say goodbye whenever you have to leave his/her side. Share your love, gratitude and appreciation with him/her in advance.
