Advance Care Planning in Pakistan: Unexplored Frontiers

Correction:
Since the initial post, two paragraphs were added to the beginning of this article which resulted in an extra page, thus articles that follow are repaginated.

Advance Care Planning, of which Advance directive is only a part, is a process of planning for future medical care under circumstances of impaired decisional capacity. Advance care planning involves a structured discussion between patient and ideally their primary care physician to explore the goals of care in the context of current and hypothetical illness states, discusses treatment options in the context of these goals of care and finally articulates and documents treatment and care preferences of the patient.¹ Advance care planning should be a routine part of preventive health care in order to avoid unneces- sary extra ordinary measures against a person’s wishes and to reserve resources which are wasted in futile care. Instead advance care planning is either non-existent or severely under-utilized in primary care practice in Pakistan.

The author explores the factors that prevent Pakistani physicians’ from incorporating advance care planning into practice. In addition to this, various steps in terms of the principles, policies and procedures are discussed which could help physicians and institutions navigate the advance care planning process.

Background

In the wake of the Nancy Cruzan case in 1990,² the landmark legal decision, the Patient Self-Determination Act (commonly referred to as PSDA), was introduced in USA in 1991. This is believed to have been the beginning of advance directives. The PSDA is a formal legislation that required all healthcare institutions to provide patients with written information regarding their legal rights in the context of medical decision-making, including the right to accept or refuse treatment, and formalise these wishes in the form of an advance directive. It is incumbent upon the clinicians to document these wishes in the patient’s medical chart which is readily and easily accessible.

Although the idea of Advance Care Planning has developed in the western culture, it is equally significant and relevant to cultures such as ours, which emphasise family involvement in medical decision-making. The premise of advance directives may have been patient autonomy, but the process of Advance Care Planning does not evolve in isolation. Cate and Gill point out that “our health care system has become obsessed with extending life at times neglecting the caring component of medicine and trampling on the rights of patients”.³ Studies have shown that Advance Care Planning discussions have actually minimised patients’ depression and increased their sense of control. It also is an effort to enhance beneficence as defined by the patient’s perspective.⁴

The principles to guide the Advance Care Planning should take into account, not only patients’ right of self-determination, or autonomy, but also local factors that contribute to medical decision-making, for instance, family’s wishes and values. It is increasingly important, not to emulate word for word, the advance directives designed for European or American patients, for they may not reflect the values and cultural aspects of the Pakistani patient. Some patients may even decide to delegate the authority partially or completely, to their heads of family or whoever is highest in the hierarchy or the one that they are emotionally attached to. Research shows that family members of Pakistani patients actively protect terminally ill relatives from knowledge of their condition.⁵ The physician should clearly solicit patient’s goals for healthcare, for example, palliation, enhancement of function or independence, prolongation of life, or palliation without prolongation of life.⁶ After ensuring that the patient fully understands the implications of this decision, it should be respected and recorded.

For Advance Care Planning to be successful, it should be discussed with all healthy, competent and adult patients in the primary care setting. In other words, Advance Care Planning should be raised before an acute crisis.⁷ Primary care physicians are in the best position to raise the topic of Advance Care Planning, discuss and clarify issues and assist in formal documentation because they have an established, longstanding, trusting relationship with the patient. In our set up, a primary care...