End of Life Care - Our Home Care Experience



The Sarawak Hospice Society had been providing Hospice Home Care services in Kuching since 1994 with cooperation of staffs in Sarawak General Hospital. In the recent years, however, our services are entirely based on volunteers consisting of clinical oncologist, doctors, nurses and lay volunteers. We would like to emphasise that our services are offered to clients who are terminal cancer patients near the end of their life.


In view of the many queries we have had, we would like to share the knowledge and experiences of our home care team during our home visits. We hope that the reader would find our shared experience helpful. We will use case stories to explain the skill. In the event if any name is stated, bear in mind it is fictitious to protect the identity of our client.


End of Life definition - NCI

Care given to people who are near the end of life and have stopped treatment to cure or control their disease. End-of-life care includes physical, emotional, social, and spiritual support for patients and their families. The goal of end-of-life care is to control pain and other symptoms so the patient can be as comfortable as possible. End-of-life care may include palliative care, supportive care, and hospice care.


What is terminal cancer?

Terminal cancer is cancer which can’t be cured and isn’t responding to treatment, and that the person is likely to die from. Any kind of cancer can become terminal. When someone has terminal cancer, the emphasis of treatment or care will be on managing the person’s symptoms and making sure they have a good quality of life.


Terminal cancer is different to advanced cancer. Although advanced cancer is also incurable, people with advanced cancer may still have treatments which could help to prolong their life. They can also receive palliative care alongside their treatment.


Some people find it difficult when they’ve been having cancer treatment to learn that it’s not working. The person’s treatment may be stopped, and the focus can change from trying to cure the illness to managing the symptoms.



End-of-life: Signs, symptoms and helpful information


The following describes the physical symptoms you may observe in EOL:


1. Coolness of limbs

Hands, arms, feet, and legs may be increasingly cool to the touch. The colour of the skin may change and become mottled. How you can help:  Keep the person warm with comfortable, soft blankets.


2. Confusion.

The patient may not be aware of time or place and may not be able to identify people around them. How you can help: If this end-of-life sign is occurring, identify yourself by name before you speak. Speak normally, clearly, and truthfully. Explain things such as, “It’s time to take your medicine now.” Explain the reason for things, such as, “So you won’t start to hurt.”


3. Sleeping. An increasing amount of time may be spent sleeping. The person may become unresponsive, uncommunicative, and difficult to arouse/awake. How you can help: Sleeping more frequently is normal. You can sit quietly with them. Speak in a normal voice. Hold their hand. Assume they can hear everything you say. They probably can.


4. Incontinence. They may lose control of urinary/bowel functions. This is a common end-of-life change that can occur during the process of passing on. How you can help: Keep your loved one clean and comfortable. Ask your hospice nurse for advice.


5. Restlessness. The person may make repetitive motions such as pulling at the bed linen or clothing. This is may be due to patient was in a state of confusion about surrounding. How you can help: Do not interfere with these movements or try to restrain them. Speak in a quiet, natural way. Lightly massage their forehead. Read to them. Play soothing music.


6. Congestion. There may be gurgling sounds inside the chest. This is also sometimes referred to as a "Death Rattle." These may also be loud. This end-of-life symptom does not indicate the onset of severe pain. How you can help: Gently turn their head to the side to drain any secretions. Gently wipe their mouth with a moist cloth.


7. Urine decrease. Output may decrease and become tea coloured. How you can help: Consult your hospice nurse.


8. Fluid and food decrease. Your loved one may want little or no food or fluid. The body will naturally conserve energy required for the task ahead. Food is no longer needed. How you can help: If this end-of-life symptom is present, do not force them to eat or drink if they don’t want to. It only makes them more uncomfortable. Small chips of ice or frozen juice chips might be refreshing. A cool, moist cloth on their forehead might help.


9. Change in breathing. The person may take shallow breaths with periods of no breathing for a few seconds to a minute. They may experience periods of rapid, shallow panting. These patterns are common and indicate decrease in circulation. How you can help: Elevating their head or turning them on their side may bring some comfort. Hold their hand. Speak gently.


10. Fever. Increase in temperature is common. How you can help: Consult your hospice nurse. A cool, moist cloth on their forehead may bring comfort.


Common issues in the terminal or end of life care


Dietary issues

The most common concern amongst family members or carers is: ‘She/he does not eat enough’. We have encountered this at every home visit and hence it is our top priority matter to address. It may seem rather simple but we wish to address this first. We will explain our reasons as we go along.


In Malaysia, food is one of our main cultural pre-occupation in our everyday lives. We tend to meet friends or have meetings centred around food. So it is not a surprise that when a person falls sick, food intake plays a very important part in the care of patient. For the family member or carer, preparation of food and ensuring the sick eats sufficiently is of paramount importance. When one has cancer, this matter becomes significant.


With a diagnosis of cancer the quandary of why one gets cancer becomes the sole preoccupation not only for the patient but also family and friends. This is the start of the slippery slope. We observed that many will become vegetarian when all their lives they have never been on a vegetarian diet. Additionally, supplements played a big part that often supplement become food. As health care providers (HCP) we face this problem continually. The patient and family will sometimes hide any intake of supplements from HCP. Only upon further inquiry of some unexpected problem/symptom, will the intake of supplements be revealed.


The intake of supplement is what we encounter at nearly all home visits. There will be numerous complaints ranging from feeling nauseous, constipation, feeling bloated, unable to sleep, not wanting to eat and the list can go on. However, not all complaints are linked to supplements. Hence the need to thorough, to explore, exclude and solve the problem at hand.


Here we will describe a case scenario. During our visit to this client who had progressed after treatment had failed for ovarian cancer. The family complained that she always felt bloated, is constipated for few days and at most meal times takes only a few spoons of soup or porridge. She was not in much physical pain but appeared to be in discomfort. She said she felt she had lot of gas. Clinically there was no ascites (water in abdomen), and she was not short of breath.


Hence we explored her supplement and dietary intake. That was when we were taken by surprise. She had a wide range of supplementary diet ranging from different types of protein milk, different types of antioxidant juices, high energy drinks and a concoction of vitamins like B17 that she was taking. This was on top of her other medication for hypertension and pain management. She took all these regularly at 2 to 3 hours daily supervised by her husband.


We informed the family the supplements were rather excessive and that her meal should be based on her current need. We explained that all these energising protein foods are useful when one is undergoing treatment for cancer. However, now that she spends most times in bed, walking occasionally, her energy requirements are different. Hence, it would be easier for her digestive system to cope with simple carbohydrate diet. The advantage of such diets is that it is easier to digest and bloated feeling would be less intense. In addition, it is something that can be prepared as part of the main family meal. For example, Asians tend to have rice at main meals. The cooked rice water can be the broth for a soup or as a drink instead of plain water. Other substitutes can be barley or mung bean drink. We encouraged them to give her other soft food like jelly or ice cream and even soft- boiled eggs and noodle soup. Her eyes lit up when she heard she could eat noodle soup.


In addition, we advised the family to serve small portions each time and the intervals can be smaller or based on her need. The main emphasis during our home visit was that she should eat what she likes and not what has been recommended by others for cure or health benefits.


We checked on them a few days later and the family said she felt much better. The feeling of bloated was reduced, no longer had nausea and had also passed motion. That brought great relief to her once she was able to pass motion. It is indeed essential to realise how the bowel movement is integral to our perception of well-being.



We need to acknowledge that we are never sure about the interactions of various supplements. Hence, if we do not explore and take a detailed history, we would prescribe medications to address her symptoms. However, that will not resolve the cause of her symptoms.


Hence it is advisable that the family share such information with the home care team. This would help the team to assist you better and improve the quality of life during the final phase of one’s life.


We have given some tips above on symptoms of EOL to help family or carers for easy reference. In addition, we have included websites that you can check for more information under the references section.



1. End of Life Definition- NCI. www.cancer.gov

2. What is Terminal Illness? Definition of Terminal Illness. www.mariecurie.org.uk

3. Patient Hydration and Nutrition -Marie Curie. www,mariecurie.org.uk

4. How Food is Making a Difference in End-of-Life- The Care Issue. Thecareissue.jaga-me.com