Understanding palliative care

AHMAD has been diagnosed with Stage 4 terminal lung cancer. He is a frail gentleman. At 78 years old, the doctors are worried that treatments like chemotherapy may cause him more harm than good.

In fact, with cancer being Stage 4, aggressive treatments such as chemotherapy or radiotherapy will come with a lot of side effects, and some of them can be potentially life-threatening.

Wong is 70 years old and has been living with renal failure on dialysis for nearly 15 years. Over the years, she has undergone multiple surgeries to create access for dialysis and the options are now more limited. She has also been diagnosed with heart failure, and it is increasingly more difficult for her to complete the dialysis regime that was planned for her initially.

Vijay was born with a condition that affected normal growth. He is unable to develop as other normal children and as a result, requires a feeding tube and continuous assessment with physiotherapist and occupational therapist involvement. Due to his disability, he frequently needs to be admitted to the hospital for problems such as dislodged feeding tube or recurrent infections.

These three cases, where names have been changed, represent a large group in our society who need support. For many decades, it is thought that the support these patients need is purely welfare in nature. Many lived with the prospect that recurrent hospitalisations were the norm and hearing comments such as: “There’s nothing more that we can do for your loved ones.”

Often, the needs of the patient are not even addressed by the treating team as medical treatments are often directed at diseases rather than the person who is experiencing it. Furthermore, the caregivers’ needs are also neglected.

Palliative Care is defined by the World Health Organization (WHO) as ‘an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain, illnesses including other problems whether physical, psychosocial, and spiritual’.

Life-threatening illnesses are any form of serious illnesses where curative options are unlikely. In Ahmad’s case, it is advanced cancer. In Wong’s case, it is kidney failure where dialysis is not possible anymore or in certain situations not aligned with the patient’s wishes. In Vijay’s case, it is the global developmental delay with multiple complications.

There are so many types of cancers that can also present at late stages or deteriorate despite the best treatments. Other organs may start to fail too, such as the heart, liver, and even lungs. Children can be born with other forms of disabilities that can also result in a serious condition.

So how do palliative care teams help you as a patient? The doctors and nurses within the team will see you following a referral. At this point, they will take a thorough history of your condition, particularly assessing any physical problems such as pain, breathlessness, vomiting, lethargy, and others.

Based on these findings, the team will make recommendations on ways to help control these symptoms.

The main goal is to provide you with comfort and improve your quality of life. Medications will be given to achieve this but sometimes, they give advice around your care that can help to achieve this without using medications too. They aim to relieve symptoms and stress from the illness, rather than curing it.

The palliative care team will also assess your psychological wellbeing, spiritual beliefs, and social circumstances. This is to ensure that you are supported holistically. They would like to ensure that the care you are receiving is patient-centred and doing a lot more to help you as a person rather than only looking into the diagnosis that has been given to you.

The team usually has some access to other allied health professionals, who can also help you with all these matters or at least address some of the issues that might affect you within these other domains.

Dame Cicely Saunders, the founder of modern hospice movements 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.”

In Malaysia, hospices, palliative care associations and select domiciliary care teams are specific teams of healthcare professionals who aim to deliver palliative care services in the community at patients’ own homes.

Previous studies have always found that unplanned hospital admissions for uncontrolled symptoms for patients suffering from life-threatening illnesses have various adverse effects including physical pain and suffering from unnecessary interventions to psychological distress from being isolated from their loved ones. Previous surveys have also concluded that most of these patients do want to spend more time in familiar surroundings.

However, for this to happen, they will need support from professionals who can give them guidance. This is where community palliative care comes in. They usually arrange periodical, scheduled visits to monitor your condition at home and assess if your caregivers can cope.

The team will provide you with continuous clinical assessment to help with your symptoms and address all the other domains of care that are also important to you.

In most situations, they will provide you with a way to contact them and be in touch with your hospital palliative care providers to ensure continuity of care and medication supply.

So how can you help? Most of the community palliative care providers (hospices and palliative care associations) are non-governmental organisations (NGOs) that rely mostly on public funding and a portion of government grants. You can help by getting in touch with your local hospices/associations to see if you can help them to raise awareness and generate funds for their operations.

Some of these organisations will also welcome volunteers to help them too. If you like to learn more about them, visit the Malaysian Hospice and Palliative Care Council (MHPCC) website for a comprehensive directory of palliative care providers in the country (https://www.malaysianhospicecouncil.com/hospice-in-malaysia).

As a healthcare professional, it is also important for you to understand the basic role of palliative care. This is for you to identify patients who will benefit from a referral to the team and for you to help explain the involvement of palliative care/hospices in a comprehensive way.

The MHPCC organises a monthly virtual free education session for you to learn topics related to palliative care via ECHO sessions (https://www.malaysianhospicecouncil.com/echo).

The council is also excited to organise the Biennial Malaysian Hospice Congress together with National Cancer Society of Malaysia Sarawak Branch (NCSMSB), to be held at Kingwood Hotel in Sibu this July 25-27.

Get more information via https://mhcc2024.com/.

* Dr Saiful Adni is the honorary secretary of the Malaysian Hospice and Palliative Care Council (MHPCC) and palliative medicine physician at the National Cancer Institute (IKN) Putrajaya.