A Lien Foundation survey found that 77% of Singaporeans prefer to die at home, but only 26% actually did so. Our palliative care team at SKH, Dr Shirlyn Neo, Dr Victoria Wong, and Nurse Clinician Gan Peiying, share more on palliative care, and what can be done to help more patients fulfil their wish of passing on at home.
How would family members know if their loved one wants to pass away at home?
We recommend having a family discussion to find out their loved one's last wishes and care preferences. However, these conversations are not always possible, and are still sometimes considered a taboo. In this case, family members may choose to bring their loved one home, if it is what they believe their loved one would prefer.
What are the benefits of spending their last days at home?
The tighter regulations on hospital visitations due to COVID-19 have led to more patients preferring to spend their remaining days at home. This gives family and friends the opportunity to visit and be at their bedside until their final moments. Even with the advancement in technology, family members often prefer to visit their loved one in person, especially in scenarios where the patient is not able to interact via a video call. Patients also often like to return home as it is an environment that is familiar and more comfortable.
What can family members expect when caring for a loved one who's at the end of their life (EOL)?
Knowing what to expect will help family members to plan better and feel less anxious. They can expect that their loved one may experience abnormal blood pressure and other vital signs, such as pulse rate. However, these abnormalities do not always indicate discomfort or suffering. Instead of focusing on these expected abnormalities, families should turn their attention to ensuring that their loved one remains comfortable. Although it is true that a loved one in palliative care may not be able to respond or engage as usual, their sense of hearing and touch will be the last to disappear. We encourage family members to hold their hands or gently massage their loved one, and to continue speaking to them. This can include important or comforting messages or last words such as:
"I love you"
"I forgive you"
"Please forgive me"
"Thank you"
This is partly due to chemical changes in the body and brain.
It is normal as they do not require many calories at this stage.
This is part of the EOL process.
This happens as blood flow to vital organs is prioritised. Face may appear pale and the soles of feet and legs may turn purple-blue colour.
This is usually due to the inability to swallow saliva..
What to do?
How can families prepare themselves and their homes for home palliative care?
A dedicated caregiver is needed as their loved one is not able to care for themselves. If this role is undertaken by family members or domestic helpers, they will be required to learn caregiving skills such as maintaining basic hygiene and administrating medications, sometimes via a simple injection. The family may also choose to engage private nursing services to support them in caregiving.
Equipment (which can be purchased or rented) required to facilitate caregiving at home varies according to individual needs and family members will be advised accordingly.
Sometimes, family members may be focused solely on fulfilling their loved one's last wishes and overlook their own well-being. Caring for a loved one who is at EOL can be both physically and emotionally demanding, hence it is important that family members have all the support to tide through this trying period.
What difficulties do families face in fulfilling a loved one's wish of dying at home?
The circumstances surrounding every family are different. A person at EOL may require more care than what their family members can provide. They may not be emotionally ready to cope with the impending loss, while others may find it challenging to provide the physical care that is required.
Common challenges include the lack of confidence in their care-giving abilities, or the absence of a caregiver due to concurrent work or family commitments. However, there are resources and services available and it is important that family members share their concerns with the healthcare team so that these issues can be addressed accordingly.
In cases where family members decide that care in an institution is the best option, we reassure them that there is no right or wrong decision as it was made with their loved one's best interest in mind.
What is usually covered in palliative care services and how can these help families?
Palliative care aims to support patients and their families who are facing complex bio-psychosocial and spiritual challenges associated with a life-limiting illness. The aim of the palliative care service in Sengkang General Hospital is to:
For family members who hope to fulfil their loved one's wish to spend their last days at home, the palliative care team can guide family members on the necessary preparations and empowering them to anticipate and manage common problems present at EOL.
They will be guided by a home hospice team through the entire process to ensure that they are sufficiently prepared and equipped to manage the care of their loved one. The team undertakes home visits to ensure that symptoms are controlled, care in the home is adequate, and that family members are coping well. They also provide psycho-social and emotional support to family members and provide bereavement care upon the demise of the loved one.
Family members should inform their primary physician if they perceive that they may benefit from a Palliative Care referral.
Tips on how families can start conversations on the topic of dying or dying at home
Having knowledge of their loved one's concerns, values and preferences can assist family members in planning ahead and advocating for their loved one. Having discussions about this is sometimes referred to as advance care planning. If a loved one is living with a serious illness, it is often beneficial to have these conversations early.
Some questions that family members can ask their loved one include:
What do you think is happening with your health?
As you're living with this illness, what are some of your fears and worries?
Should you get weaker, where would you like to be cared for? For example, do you want to spend your last days at home, or are you okay being in the hospital?
How can I support you?
"Living Matters" is a national advance care planning initiative that promotes open conversations between the patient, family and health care providers on future care preference. Individuals living with a serious illness and their family members should access the "Living Matters" workbook online. Alternatively, families can inform their physician that they would like to speak to an Advanced Care Planning Coordinator. Although caring for a loved one at EOL can appear daunting, family members should always remember that there is help available, and that they are not alone.
Advance Care PlanningLiving Matters – My Care Wishes WorkbookEnd of Life Planning
Information for CaregiversSingapore Hospice Council
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