“ do away with suffering of the sick, to lessen the violence of their diseases, and to refuse to treat those, who are overmastered by their diseases, realizing that in such cases, medicine is powerless” 

Hippocrates

Care towards the end of life is a very important continuum in every person’s care plan. Palliative care, symptom relief, psychological support, care for comfort and basic human needs should be the highest priority for the healthcare provider even though cure is no longer possible. This is not a role to be neglected nor taken lightly. In caring for another human being, little can compare with the relief provided at the end-of-life. 

All healthcare providers should equip themselves to care for someone at the end of life, considering issues such as:

• Pain relief and comfort measures

• Compassionate communication

• Understanding psychosocial and spiritual needs of a dying person and their loved ones

• Knowing the ethical basis of good end of life care

All of us will walk down this path at some point in time be it ourselves, our family or our loved ones. As healthcare providers we should always work towards the care we would expect for ourselves.  

The Advance Care Plan usually comes in several parts

• Statement of Wishes – which often states their wishes and concerns relating to end of life care

• Overview of current illness – prognosis, outlook and expected course

• Treatment that they are currently receiving

• Information about their healthcare provider

• Preferences on treatment which they wish, or do not want to receive (POLST – Preferences for Life Sustaining Treatments)

The POLST component should have been filled by a healthcare provider and must have been made voluntarily by the patient themself who was mentally competent at the time. It should also be the most current version available. The POLST helps medical professionals communicate with one another. 

Although ACP is not mandated by law, where circumstances, capacity, resources and clinical context do not limit its use – such wishes should be adhered to wherever possible.

Advance Care Planning (ACP) requires a lot of discussions between healthcare providers and patients with their loved ones. This sometimes involves breaking of bad news, difficult decision-making and can often be distressing for everybody involved. Healthcare providers may be uncomfortable dealing with such conversations due to lack of experience and avoid it altogether. Contrary to beliefs that talking about end of life issues leads to more distress and depression, evidence suggests that addressing such issues appropriately leads to more satisfactory outcomes and better overall experiences for patients and families. 

ACP discussions are sensitive in nature and leave long lasting impressions. However, it can also potentially have adverse impacts. These situations require a skilled and steady hand. They are not to be taken lightly and should ideally be conducted by healthcare professionals with some degree of training using structured protocols and materials. 

Healthcare providers can improve the communication experience by ensuring the following:

• Sit in to observe conversations led by more experienced personnel

• Learn key communication skills through local ACP training programs

• Practice role plays where structured feedback is provided. 

Several hospitals have developed excellent training programs which incorporate role-plays with faciliatators from a variety of specialties and hospitals to provide a wide range of scenarios.  This is an excellent framework to build on, expanding into a nationwide training program.

For people who are very unwell and approaching the end of life, home is sometimes the desired place of care. It has been said that in general, patients spend about 95% of their time outside hospitals, or at home. It is therefore very important that relief of symptoms and palliative care support is continuously provided as patients are discharged from hospitals back to their homes. 

Community services such as hospice care and domiciliary care teams can help to support patients and their families by assessing their symptoms and ensuring that they are comfortable. Home care is an important component of care for someone who is facing the end of life as hospitals are often difficult to access especially when a person is in pain and having a lot of disabilities. Apart from that, the home provides a familiar atmosphere where most people can feel at ease and comfortable. 

Healthcare providers must be familiar with basic symptom management such as pain relief and nursing care as this can really help patients fulfill their desire to remain at home. Research has shown that if essential medications and expertise is available, patients’ symptoms can be managed equally well at home as in a hospital.  It is important to communicate with caregivers about using adequate dosage for pain relief especially if symptoms worsen, and to brief them on how to ensure adequate supply of such medications.

For patients and their loved ones, dealing with terminal illnesses causes significant psychological stress and impact. Recognizing that both patients and their caregivers need psychological support in these difficult times is key for healthcare providers in maintaining an emphatic and understanding relationship. Facilitating their Advance Care Planning preferences and wishes helps improve patient and loved ones involvement in decision-making, reduces psychological stress and improves overall experience at the end of life. 

It is therefore most important to treat patients in a holistic manner, considering all the domains that define a patient as a person. By providing the necessary psychosocial support, patients and family members/caregivers will be able to discuss about what matters the most. 

ACP discussion will touch on important subject matters that can be emotional to patients, caregivers and healthcare providers. Healthcare providers need to recognize that the patient care should take into account psychosocial and spiritual components in addition to physical problems. There are resources that might be available in different settings such as counsellors, clinical psychologist and social workers.

A survey done by Hospis Malaysia in 2016 reported that 61% of people stated a preference to die at home. This is a common request especially in many Asian cultures. While a home death is often felt to be desirable by many it should not be assumed that it is the preference of all people and / or is suitable for all patients. It is therefore vital to discuss this preference with family members utilizing information from the ACP to assist decision making.  

In order to support a wish to die at home the following need to be considered:

• Comfort is optimised and maintained over the expected course

• Family and carers are available at home, are fully informed on what to expect, and what to do

• Family are supportive to provide care at home, with managed expectations 

• Goals of care are discussed and clarified, especially in situations of deterioration

• Management of death itself is planned for.

This list may sound overwhelming and it is easy to be discouraged at first glance; but it is important for healthcare providers to provide assistance and guidance in support of family members seeking information and help in this matter. One small step at a time is often a good approach.

In supporting people towards the end of life, it is often necessary to dispel certain often held myths regarding dying patients. Healthcare providers help reduce worries and grief amongst caregivers and family members of dying patients by providing accurate information in an emphatic manner.

ACP Links from Malaysia

• Hospis Malaysia – Decision-making for the end of life [Link] ENG

YouTube Videos from other countries

• Learning more about ACP [Link] ENG / BM Subtitles 

• ACP explained in animation [Link] ENG

• ACP for everybody [Link] ENG / BM Subtitles

• Can talk about dying, meh? [Link] ENG / BM Subtitles

• Starting the conversation [Link] ENG

• Having the conversation [Link] ENG

• ACP  discussion process – animation [Link] ENG

• The questions that matter the most [Link] ENG

• Changing one’s mind about an ACP decision [Link] ENG

• 5 steps towards your ACP [Link] ENG

• The Hospice Care Plan [Link]

Online Resources from other countries

• Helping with information and deciding [Link] 

• ACP Booklet (AIC Singapore) [Link]

• Advance Care Planning Australia explained [Link]

• Advance Care Plan – UK and Wales [Link]

• Common Myths about Advance Care Planning [Link]

• Understanding the Process of Dying [Link]

• Changes in the last hours and days [Link]

• What to expect in the last moments before death [Link]