Navigating the journey towards the end of life is a deeply emotional and often challenging experience for both patients and loved ones. In this article, we'll explore the significance of palliative care in the final chapters of life and guide you on how to find compassionate care services that can provide comfort and solace during this profoundly sensitive period.
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You Only Have One Chance to Get it Right!
Mdm Tan was 90 years old with dementia. She became increasingly weak over 1-2 days. Her speech was unclear, with a lot of secretion and rattling sound coming from her throat. Her family was very disturbed by the rattling sound, feeling helpless with her irregular heart beats.
As it was her wish to remain at home, her family decided to care for her at home as best as they could. The children and caregiver took turns to stay by their mother’s side at all times, and called on home palliative care service, led by Ninkatec’s Dr Choo Wei Chieh, for support.
Dr Choo visited and carefully assessed that she was actively dying, her throat secretions were a phenomenon known as the “death rattle”. He took time to explain to the family about Mdm Tan’s condition. As the family agreed that the focus was to relieve her symptoms, Dr Choo prescribed subcutaneous injections to manage the throat secretions and pain. The family was trained on how to give the injections and supported throughout the process via 24/7 chat. When supplies ran out after business hours, it was sent over immediately. The support around the clock by the compassionate medical team at Ninkatec made them feel more assured to carry out home care for their mother.
Mdm Tan passed away 3 days later at home, peacefully in the loving care of her family. In her daughter’s words, “Till date, we are grateful to Dr Choo for the memorable moments we had with mummy during her last 3 days with us. Instead of sending her to hospital which would have limited visiting hours and less comfort, all our family members, mummy’s beloved nieces and nephews, relatives and friends managed to bid their last farewell, it was a beautiful reunion for all of us! Thanks to mummy for her refusal to be admitted into the hospital! Thanks to Dr Choo’s experienced support and Ninkatec’s palliative service for helping us to make mummy’s wish come true!”
(Disclaimer: The patient’s name has been changed to protect the privacy of the patient and family.)
What is Palliative Care at Home?
Palliative care at home helped Mdm Tan’s family honour her wish to spend the final days in the comfort of her home. Enabled by advances in home care technology and pain management techniques, palliative care focuses primarily on improving the quality of life for people with life-threatening illnesses. Specifically, it aims to provide relief from symptoms such as pain, shortness of breath, nausea and fatigue and other suffering that may arise due to these serious conditions.
While home is a common setting to receive palliative care, you can also seek palliative care from various hospitals, nursing homes, hospices, senior day care centers, and specialist clinics in Singapore. The healthcare professionals providing palliative care aren’t a single doctor or nurse. They work together in multidisciplinary teams, which can comprise doctors, nurses, therapists, and social workers, to address the medical, physical, emotional, and psychological needs of patients, as well as those of the patient's families.
Palliative care can be provided at any stage of an illness, regardless of whether the patient is terminally ill or not. Patients receiving palliative care can be in the final stage of life - like in the case of Mdm Tan. Or they may have just been diagnosed with a critical illness and consider palliative care to make it more comfortable and manageable to battle the condition. It can also be given when curative treatments have stopped or are no longer desired, in which case palliative care is also known as hospice care.
Palliative Care vs Hospice Care vs Terminal Care
You may encounter the terms “palliative care,” "hopsice care" and "terminal care" and have the impression that they are used interchangeably. All these terms refer to the care and support provided to people with serious illnesses to improve their quality of life. However, there are subtle differences in meanings, especially when you speak to medical professionals.
Palliative Care
WHO defines palliative care as a care approach that improves the quality of life of patients and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.
The overarching goal of palliative care is to help people in all stages of illness live as fully and comfortably as possible, whether they are actively seeking curative treatment, in remission, or approaching the end of life. As palliative care can be given to different stages of illness, when you hear someone is receiving palliative care, it does not necessarily imply that the person is terminally ill and death is imminent.
Hospice Care
Patients with shorter prognosis of 6 months or less may be cared for by a hospice service. Typically, for these patients, the goals of treatment are no longer curative. Hospice care can be delivered at an inpatient hospice facility, a hospice day care centre, or the patient’s own home.
Terminal Care
The term “terminal care” is mostly used by healthcare professionals. It refers to the specialised care provided to people who are in the final stages of a terminal illness. Their condition is no longer curable, and they have limited life expectancy, possibly days or weeks. The focus is to ensure comfort, relief from pain, and support during the dying process.
In the remaining part of this article, we address palliative care in the context of end-of-life and terminal care. To understand palliative care holistically and how it can support other stages of illness, please refer to our guide to palliative care in Singapore.
Who is Palliative Care for?
Palliative care and hospice care are commonly associated with advanced cancer. However, patients with other debilitating conditions can also benefit from it, such as people with stroke or late-stage dementia. Regardless of the underlying condition, you can call on a palliative care team for support to address pain and other physical discomfort your loved one is going through. You can also consider palliative care when you need assistance to alleviate the emotional distress for both the patient and the family, and to navigate complex medical decisions associated with a life-threatening illness.
In the context of end-of-life care, a patient and family may seek palliative care in the following typical situations:
- A cancer patient with limited prognosis, e.g., 3 months or less
- A dementia patient with recurrent infections
- A person with heart failure who has persistent trouble breathing
- A person with end-stage kidney failure who has stopped receiving dialysis
How Much does Palliative Care Cost in Singapore?
The cost of palliative care can vary depending on the level of care required, whether it is in-patient, day-care or home-care services, and the duration of care. In Singapore, inpatient hospice care is estimated to cost $7,000/month (before means testing and subsidies). Hospice day care costs range from $1,000-$1,600/month (excluding transportation and assuming daily attendance).
Home-based palliative care is often personalised and so is the cost. Determining factors include the requirement for monitoring, visit frequency by healthcare staff, medications and medical consumables, and medical equipment that needs to be fitted at home. There can also be additional costs if you engage a professional caregiver or a domestic helper to care for a loved one. We detail the cost of home care in Singapore here, which may be helpful for you when you do planning or budgeting for long-term care.
If you need financial support, consider organisations like Assisi Hospice, HCA Hospice, and Dover Park Hospice. They provide palliative services at highly subsidised rates or free of charge. Admission requires referral from healthcare professionals and means-testing. Consult your doctor or visit the Singapore Hospice Council website to learn more about these services.
Using MediSave for Palliative Care
You can use MediSave to pay for your palliative care cost, including home palliative care, day hospice care and inpatient hospice care. For terminally ill patients, e.g., terminal cancer or end-stage organ failure, your own MediSave can be used without any withdrawal limit. If you use a family member’s MediSave, the withdrawal limit is $2,500 per patient per lifetime.
More subsidies to palliative care are coming in 2024. As announced by the Ministry of Health, all Singaporeans will receive subsidies of 50 to 80% for their inpatient palliative care, home palliative care, and day hospice care cost, while Permanent Residents can expect subsidies in the range of 25 to 50%, with higher subsidies for people with lower per capita household income.
MediShield Life claim limits for inpatient palliative care will also be raised in 2024. Please follow MOH’s announcement or our Facebook page for timely updates.
Singaporeans’ Attitude towards End-of-Life and Palliative Care: What is Changing?
According to a survey by the Lien Foundation, over 70% of Singaporeans want to be cared for at home when they reach their end of life, and to die at home. Yet, this isn’t happening in reality. Government statistics show that 70% do not pass away at home. Hospital is the most common place of death. Why is there such a mismatch?
Experts believe a lack of awareness and lack of care planning in advance contribute to this discrepancy. Faced with a critically ill situation, patients and families may perceive that hospitals are better equipped to provide care for them. Other people favour home care but think palliative care is costly or don’t know how to engage the service for their loved one.
Some terminally ill patients may end up in hospital in an unexpected turn of events. An acute episode such as persistent high fever or severe shortness of breath may trigger the family to call for an ambulance. The patient is subsequently admitted to ICU at a hospital, where they remain until their passing.
How Do You Wish to Leave?
While various organisations and government bodies are working together to make palliative care more affordable and accessible in Singapore, an important task needs to happen at home - the conversation about how you wish to leave. The same Lien Foundation survey above reveals that only 50% have ever talked about death or dying with their loved ones. How can we have a loved one’s wish fulfilled when we don’t know what it is?
Granted, initiating a conversation about death is hard. It is deeply emotional, oftentimes a taboo and morbid topic to talk about. For family members, we don’t want to sound like we are thinking the unthinkable or have given up hope. For the patients battling a critical condition, it may feel like they are putting additional burden on their loved ones. This is why many of us may know that it is an important discussion to have sooner rather than later, but we would delay it, often until it is too late.
In Singapore, the “die-logue” is slowly opening up. Some people appoint a nominated healthcare spokesperson and draw up their Advance Medical Directive (AMD) early on, to make sure they receive the care they want when they are no longer able to make the decisions themselves. Some people plan their own funerals, viewing it as a way to take control of their endings and relieve the burden from loved ones. Yet, it remains a big discussion gap that we need to close.
A good place to start is to familiarise yourself with Advance Care Planning (ACP), the process of planning your medical and personal care needs ahead of time, when you are mentally and physically well to do so. You can get help from your family doctor or GP physician to start reflecting and planning. Your own experience will also ease the conversation about care options and death with your loved ones. You don’t need to wait until you are facing a serious illness or nearing the end of life to start talking.
When Opting for Palliative Care at Home, Medical Support is Key.
“For patients and families considering end-of-life palliative care at home, the top concern is their ability to handle complex medical tasks without the immediate support of healthcare staff and medical resources available at a hospital,” said Dr Choo Wei Chieh, Home Care Doctor and Cofounder of Ninkatec. The patient may have expressed their wish to remain at home and surrounded by loved ones, rather than in a hospital room surrounded by medical equipment and strangers. Yet for the family, the question “Is this the best I can do for my loved one?” can still weigh heavily in their mind at such a difficult time.
“Such concern is completely understandable,” Dr Choo acknowledged. “Medical support from the palliative care provider is crucial for home-based patients. Part of it can be addressed thanks to advances in home healthcare technology, which enables high-quality medical care and symptom management in the comfort of a patient’s own home. The other part is the human factor. Patients and families need to feel they are reliably and emotionally supported throughout the journey by a medical team they can trust. That’s what technology can’t deliver on its own, and what we strive to do.”
Medical support goes beyond doctor consultations, medications and nursing procedures. The family may face a multitude of complex decisions that they have never dealt with before and need advice on. For example, in the event a hospital transfer is inevitable, is a DNR (do not resuscitate) order necessary and how to get it done? What about Advance Medical Directive (AMD) and Power of Attorney (POA)? How much to feed and hydrate a loved one when they refuse to eat? How to know when the final hours are coming? What to do then? And more.
When you are evaluating palliative care at home for a loved one, it is important to look for a service provider with well-trained doctors and nurses and 24/7 support. The ability to maintain open and honest communication with the palliative care team is also crucial, so that you can share all your concerns and worries. "Palliative care is not just about medical care and symptom management, it is also about providing peace of mind for the family and ensuring a dignified and fulfilling end-of-life experience for the one leaving," highlighted Dr Choo.
Dr Choo Wei Chieh shares more valuable insights from his experience providing comprehensive care for terminally ill patients in an interview with The Life Celebrant's Angjolie Mei. Watch it below!
Takeaway Message
The complexities of a terminal illness, the emotional weight of an impending hard farewell, the lack of guidance due to missing a crucial conversation we wanted to have but didn’t, all of these can make navigating a loved one’s most tender moments incredibly challenging.
Yet, there is support and help for us to count on. Palliative care at home offers a profound opportunity for us to live well and leave well, surrounded by the warmth and familiarity of our own cherished spaces and loved ones. With palliative care, we honour our loved one’s individuality, their autonomy and dignity until the very end. May “Live Well, Leave Well” be the enduring light of compassion and love that guides us all.
About Ninkatec
Ninkatec provides home care that is led by doctors. We work with nursing, laboratory and other clinical partners to provide comprehensive, coordinated home care services. Our clinical focus is on sub-acute (e.g., recurrent infections, heart failure, COPD) and palliative or terminal care. All service packages include assessment to ensure the patient’s condition and home environment are suitable for palliative care at home, as well as remote monitoring, 24-hour hotline and chat service for your peace of mind. Above all, we hold a steadfast commitment to providing quality and compassionate care that empowers choices and facilitates family bonds. Please feel free to chat with us or leave your enquiry in the form below to know more.
