Founder of hospice care Cicely Saunders once said, “You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully but also to live until you die.”
While these words continue to ring true and remain the foundation for palliative care today, consultant in palliative medicine at Subang Jaya Medical Centre (SJMC) Dr Tan Seng Beng explains that the subspecialty of palliative medicine now extends beyond preparing for one’s final days.
Dr Tan Seng Beng, consultant in palliative medicine
“Palliative care is a team approach to improve the quality of life of patients with life-limiting illness, and their families. Palliative medicine specialists help to reduce or prevent patients’ severe or serious health-related suffering be it through physical, psychological, social or spiritual support. Palliative medicine covers the treatment of symptoms as well as the psyche of the patients and their caregivers.
Nevertheless, there are several misconceptions regarding palliative medicine and this can lead to unfortunate consequences, including an increased level of suffering, depression and anxiety for affected patients.
1. Palliative medicine is restricted to those who are dying
Many people believe that palliative medicine is limited to those who are living their final days due to terminal illnesses such as cancer. However, Dr Tan elaborates, “Palliative medicine is applicable early during an illness’s trajectory. This increases the chances for palliative doctors to provide appropriate help and support throughout the journey as they are able to better familiarise themselves with the patients and the problems they face. Palliative medicine is not limited to people who are dying but for anyone with a life-limiting illness at any stage of their disease.”
Palliative medicine is also applicable to patients living with other life-limiting illnesses such as end-stage kidney disease requiring dialysis, advanced organ failure, end-stage heart or lung disease, motor neuron disease, conservatively-managed category 5 COVID-19, advanced human immunodeficiency virus (HIV) disease, poor prognosis stroke and advanced Parkinson’s disease.
2. Palliative medicine is only administered when nothing more can be done through curative or life-prolonging treatment
Regardless of the outcome of curative or life-prolonging treatment, palliative medicine physicians and specialists believe there is always more that can be done to reduce the level of suffering faced by patients. This support may be to address physical, psychological, social or spiritual challenges faced by not only the patients but their loved ones and caretakers.
The earlier patients are referred to palliative medicine experts, the more likely that more support can be given.
Dr Tan shares some of the support provided include managing patients’ complex symptoms, providing psychological support, assisting patients and their family members in difficult decision-making, helping in advance care planning, and supporting family members through their grief and bereavement.
The misconception arising from the traditional model of palliative medicine, where the primary physicians only refer patients to palliative care when they do not see any visible progress in their life-prolonging treatment, has led to late referrals, limiting palliative medicine experts’ contribution.
However, this is no longer the case with the modern integrated approach. Early introduction to palliative care can result in better outcome for both patients and their loved ones.
3. Palliative medicine focuses on pain relief with morphine use
Physical pain relief represents only one part of palliative medicine. Dr Tan explains palliative medicine covers a larger spectrum of symptoms which includes breathlessness, nausea, fatigue, sleep problems, agitation, constipation, etc.
Morphine is not the only medicine used in the relief of pain. There are a wide range of analgesia that can be used to treat pain specifically. The medications prescribed differ according to the type of receptors the drug is targeting in the body. Therefore, symptoms with similar characteristics but different causes may respond to different drugs from different classes. Another example is nausea and vomiting, there are a wide range of medications to treat nausea and vomiting due to different causes, not just a single type of anti-vomiting.
Furthermore, there is much more to palliative care than medication and there is much more to the well-being of a person than just their illness.
4. Patients are left to feel abandoned
It is possible for patients to feel a sense of abandonment by their primary doctor when they are referred to palliative specialists once treatments stop showing progress. In addition, the reality of death becomes even harder to accept.
It is for this reason that palliative medicine emphasises on the non-abandonment approach. Dr Tan explains that with the involvement of palliative medicine specialists from the very beginning of treatment, patients are ensured of having specialists by their side throughout the entire journey, assisting to reduce pain or suffering at all times.
Though it may seem that all hope is lost when diagnosed with a life-limiting illness, palliative medicine helps patients to see otherwise, and that hope can be found in many other things in life, and not just in cure.
“There are many things palliative specialists can do to help patients fulfil their hope because it can be devastating when you’ve lost so many things in life while going through a serious illness, including your body function and your material life. Palliative experts try to make sure they don’t lose their sense of control. Finding out what brings them hope is how we help patients,” Dr Tan shares.
It is crucial for people to understand the need for palliative medicine and recognise the advantages of undergoing palliative medicine concurrent with curative or life-prolonging treatment of life-limiting illness.
There is also a need for primary doctors to help break down the common misconceptions during their regular consultations and encourage patients to consult palliative medicine experts early in the treatment.
Taking into account the realities of life-limiting illnesses and the challenges faced, patients and caregivers require support throughout the journey. At the very least, palliative medicine is geared towards enabling patients and loved ones to have a positive outlook on life despite facing a serious illness.
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Caring for all involved
Learning and living with a life-limiting illness is challenging and it is not something that should be handled alone. Patients, along with their families can benefit from having trained professionals to guide them through their illness and change in their life.
Psychosocial care is a big part of palliative medicine and it is divided into information giving, emotional support, caregiver support and spiritual support.
Through accurate information giving, patients and their families would:
- Be able to better understand what is happening at all stages of the illness
- Have any doubts and concerns properly addressed by specialists
- Have more confidence in managing the symptoms of the illness
- Know where and when to seek help, be it to mobilise resources such as renting oxygen or other medical equipment needed at home, home care nurses or referrals to a community hospice.
Through emotional support, patients have physicians who are:
- A pillar of emotional support throughout the process
- Attuned to their needs such as delicately walking the patients through hard and heavy topics of discussion
- Sensitive to the language and words used during communication between themselves and their families so as to avoid distress - Eg. cautious of using words such as “dying, terminal illness, life-threatening illness”.
Caregiver support represents the aid provided to those living with and taking care of patients. This can sometimes even include the patients’ pets. This aid may include:
- Assisting to gather a community of helpers to support a sole caregiver made up of close friends
- Bringing the patient’s pets to visit its owner in the hospital
In terms of spirituality, physicians:
- Are committed to providing hope and meaning for patients
