Patient’s Disease Journey: Role of Ethical Palliative Care

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Dr van Jaarsveld and her dedicated team, operating from the Universitas Academic Hospital, provide a comprehensive approach to palliative care. They seamlessly integrate palliative care alongside disease-focused treatments, working closely with specialists who are managing the patient’s underlying medical conditions. Their expertise extends to a range of conditions, including cancer, chronic lung diseases, heart failure, renal failure, and neurological diseases.

Dr van Jaarsveld recently presented an ethics webinar hosted by Specialist Forum and sponsored by the Association of Palliative Care Centres. This webinar is accredited for one (1) ethics points. To earn an ethics point, you can watch the replay of the webinar and send your information to Include your name and surname, MP number in the body of the e-mail and the title of the webinar in the subject line. To watch the replay, click on the link:

Practising medicine is a balancing act

The reality is that some patients will inevitably die from their diseases, despite the best available treatments. Medicine should not solely focus on preventing death but also on promoting health and relieving suffering, stressed Dr van Jaarsveld.

Viewing death as a failure of medicine can hinder doctors' ability to recognise when a patient is dying or that their disease is incurable, missing the broader aspects of a patient's journey.

Historically, medical care has concentrated on curing or prolonging life until a point of no return and patients are then either transferred to a hospice or home, leaving them feeling abandoned. Dr van Jaarsveld emphasised that even the best medical care doesn't necessarily lead to a good outcome.

A recent international study with 84 participating countries revealed that South Africa ranked low in terms of the quality of death for patients. The indicators used in the study revolved around basic care elements, such as effective pain and symptom management, clean and safe environments, and culturally sensitive and emotionally supportive care.

She stressed that it is extremely important that treating physicians spend time with patients and to try to understand their needs. It is also critical that ethical considerations be taken into consideration. Dr van Jaarsveld noted that autonomy (the right of patients to make decisions for themselves) is a fundamental ethical principle in palliative care.

Importance of communications

Effective communication is another integral part of palliative care. According to Dr van Jaarsveld, patient and family-centred communication is central throughout a patient's journey. It also involves effective communication among healthcare workers to ensure everyone understands the patient's desires and priorities.

Discussions should include the goals of care and serious illness, where the principles of beneficence (doing good for the patient) and non-maleficence (avoiding harm) play a vital role.  Another key component of palliative care is the concept of total pain, which encompassing physical, psychological, spiritual, social, and cultural aspects.

Palliative care should affirm life

The World Health Organization's definition of palliative care emphasises the integration of palliative care early in a patient's disease-oriented care rather than viewing it as a later transition. Research findings support the idea that early palliative care improves patients' quality of life (QoL), emotional well-being, symptom control, and even extends their lives.

Dr van Jaarsveld stressed that palliative care should affirm life, view dying as a normal process, and help patients accept this fact without losing hope. Palliative care supports patients in living actively and true to themselves, beyond being defined solely by their diseases.

Prognostication is a challenging aspect of palliative care, with patients often desiring awareness of their prognosis despite its uncertainty. Dr van Jaarsveld emphasized the importance of helping patients set realistic goals of care based on prognostic awareness.

Do not resuscitate order

Discussing a do not resuscitate (DNR) order is an important aspect of end-of-life care and should be considered in certain situations. A DNR order means that in the event of cardiac arrest or respiratory failure, medical professionals will not attempt cardiopulmonary resuscitation (CPR) to revive the patient.

The following should be taken into consideration when discussing a DNR order:

  • Appropriateness: Deciding on a DNR order should be based on the patient's medical condition, prognosis, and their own wishes. It's typically considered when attempts at resuscitation would be futile or when a patient's QoL would significantly deteriorate with resuscitation.
  • Timing: The timing of discussing a DNR order can vary depending on the patient's condition. In many cases, it's appropriate to discuss it when the patient is admitted to a hospital, especially if they have a terminal illness or advanced-stage disease. However, it should also be revisited and discussed periodically, especially if the patient's condition changes.
  • Patient and family involvement: It's crucial to involve the patient and their family in the discussion. Ensure that they fully understand what a DNR order entails, its implications, and the reasons behind it. The decision should be made collaboratively and based on the patient's wishes, values, and goals of care.
  • Documentation: A DNR order should be clearly documented in the patient's medical records, and a DNR bracelet or pendant may be provided to alert healthcare providers in emergency situations.
  • Advanced care planning: Discussions about DNR orders often tie into broader conversations about advance care planning. Patients should have the opportunity to express their preferences regarding life-sustaining treatments, comfort care, and end-of-life decisions.
  • Medical ethics and legal considerations: Healthcare providers should be familiar with the ethical and legal aspects of DNR orders in their region, as laws and guidelines can vary. Understanding the principles of informed consent and shared decision-making is essential.
  • Reassessment: It is essential to periodically reassess the DNR order, especially if the patient's condition improves or deteriorates. Patient preferences and goals of care may change over time.

Navigating autonomy and decision-making for minor patients

Navigating autonomy and decision-making for minor patients in palliative care can indeed be complex and involves various factors, including the child's capacity to understand and make decisions, parental rights, and the role of the state, noted Dr van Jaarsveld.

The following are important to take into consideration:

  • Child's capacity: The child's ability to understand their medical condition and the implications of treatment decisions should be assessed. Depending on their age and maturity, some children may have the capacity to express their preferences and make decisions about their care. In such cases, their autonomy should be respected.
  • Age and maturity: Laws and regulations regarding minor patients vary by jurisdiction, often considering the age and maturity of the child. In some places, minors of a certain age (eg adolescents) may have the legal right to consent to or refuse specific medical interventions, including certain aspects of palliative care.
  • Parental rights: Parents or legal guardians typically have the authority to make medical decisions on behalf of their minor children. However, their decision-making should prioritise the best interests of the child. In cases where there is a conflict between the child's wishes and the parents' decisions, courts may need to intervene to determine what is in the child's best interest.
  • Shared decision-making: Ideally, decisions regarding a minor patient's palliative care should involve both the child (if capable) and their parents or guardians. Shared decision-making can help ensure that the child's voice is heard and that decisions align with their values and preferences.
  • State intervention: In some situations, if it is determined that a parent's decisions are not in the child's best interest or are endangering the child's well-being, the state may intervene to protect the child. This typically involves legal proceedings and is considered a last resort.
  • Ethical consultations: Healthcare providers often seek ethical consultations and guidance when faced with complex decisions involving minor patients. Hospital ethics committees and experts in paediatric palliative care can provide valuable insights and recommendations.
  • Advance care planning: Encouraging discussions about advance care planning, even with minor patients, can be beneficial. While younger children may not make specific medical decisions, they can express their values and preferences, which can guide decision-making in the future.

Take away messages

  1. Palliative care is no exclusively end-of-life care but should rather focus on a holistic approach that prioritises patient well-being throughout their journey. A holistic approach requires a shift in focus from prolonging life at all costs to providing quality care that enhances the patient's experience and ensures a dignified end of life. Ethical principles, particularly patient autonomy, are central to this approach.
  2. A patient-centred approach, ethical considerations, evidence-based practices, and early integration into a patient's care journey are essential in palliative care.
  3. A DNR order is a complex and sensitive issue that requires careful consideration and discussion. It should be tailored to the individual patient's needs, values, and medical circumstances. Open and compassionate communication with the patient and their family is key to making informed decisions about DNR orders and end-of-life care.
  4. Decision-making for minor patients in palliative care requires a delicate balance between respecting the child's autonomy, considering parental rights, and prioritising the child's best interests. It is a complex area that may involve legal and ethical considerations, and healthcare providers should work collaboratively with families to navigate these challenging situations while focusing on the well-being of the child.


Dr Dalene van Jaarsveld

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