In the medical sphere, an adult patient who is able to make his/her own decisions has the right to agree or disagree to some types of treatment that will be carried out on him/her. This right persists even when the patient is unable to communicate directly with the doctor due to their condition. Advance care planning is one way to help other people, such as medical personnel and their families, to understand the individual’s values, hopes, and wishes in choosing certain types of treatment and medical actions at the end of their life. In Indonesia, or Asian countries in general, it is still taboo for many people to talk about (what they want in) the end of life.
What Is Advance Care Planning?
Advance care planning is a process that helps a person make decisions about management of current and future health problems if the person can’t participate directly in decision-making in the future. This process is also known as a future treatment plan discussion. There are four steps to create an advance care plan:
- Consider values and preferences that are relevant to values, expectations, situations, and wishes
- Discuss those values and preferences with other people (family or relatives and/or health workers)
- Document the plan and wishes if considered necessary
- Review the plan regularly and update it as needed
ACP is a means that allows people to reflect on their values, hopes, and wishes for the care and medical treatment they want in the future. In patients who already have a chronic disease, these values, preferences, and desires can change according to the condition of the illness at that time. The process of contemplating hopes and wishes in accordance with the condition of the patients is what is referred to as reflection. Therefore, proper comprehension of the patients’ health condition is important for ACP.
Determining the right people to discuss also requires process and reflection. Who is the right person? Is there the wrong person? According to whom? Everyone has the right to decide with whom he or she discusses the ACP. Usually this person is family, significant others (if you don’t have family), and/or health workers, for example family doctor or doctor in charge.
This plan is useful as a guide for the family, colleagues, and medical team when the patient is unable to express his/her views on treatment decisions. For example, when a patient has to undergo an end-of-life treatment due to a terminal disease, he/she may decide whether or not to receive resuscitation. ACP is also a discussion about what is important for an individual at the end of his/her life, for example: freedom from pain and suffering, being close to family during illness, and also how and where a person wants to spend the end of his/her life.
When planning for future care, people need to understand the possible future treatment options, reflect on these options, discuss them and make plans based on this set of processes. Therefore, they usually need other advice and input to make the plans meet their needs and health status.
What Is Do Not Resuscitate (Allow Natural Death)?
Advance care planning may include do not resuscitate or allow natural death instruction, which is instruction not to resuscitate a patient who is unconscious due to body system failure. The purpose of the do not resuscitate instruction is to allow a natural end-of-life process to occur and avoid prolonged suffering. The do not resuscitate instruction can be carried out under the following conditions: (1) at the request of the patient, either directly (verbally) or indirectly (through a document signed by the patient while the patient is still conscious); (2) the decision of medical personnel if the risk of harming the patient as a result of resuscitation measures is considered to be greater than the benefits (according to the ‘do no harm’ principle).
What is resuscitation? Resuscitation is usually performed on patients with circulatory and respiratory disorders, especially heart and lung disease. Resuscitation is generally performed when the patient stops breathing or the heart stops beating. Although the goal of resuscitation is to restore body system functions, there are possible side effects that can affect the patient’s future life.
There are several situations that can encourage a person to include do not resuscitate instructions in his/her advance care plan, including:
- Have a short time left to live due to terminal illness
- Have a severe chronic disease, such as congestive heart failure or chronic obstructive pulmonary disease, so resuscitation has a very low success rate and may prolong the patient’s suffering
- Decreased quality of life or increased dependence on others to meet basic daily needs
However, a healthy person should also be able to determine a health care proxy or trusted surrogate that can provide decisions related to treatment when he/she is incapable (for example due to injury caused by an accident or stroke or sudden loss of consciousness). The person can also ask for do not resuscitate instructions in his/her future care plans.
What Is the Difference between A Curative Therapy Plan and A Symptomatic Therapy Plan?
When treating patients, a medical team may provide curative or symptomatic therapy services. Symptomatic therapy is often referred to as palliative care. Both have significant differences in terms of goals and actions provided. Decisions about curative and symptomatic therapy plans may be included in the development of an advance care plan.
Curative therapy plan is designed to cure an illness or promote the patients’ recovery from an illness, injury, or medical condition. This therapy can be performed in a hospital or at home. The treatment includes medication and surgery. Examples of treatment plans are chemotherapy for cancer patients or physical therapy for stroke patients.
Meanwhile, symptomatic or palliative treatment plans focus on controlling or alleviating symptoms to make patients feel more comfortable and less affected by their disease. Symptomatic therapy can be delivered at home, in a hospital, or in a long-term care facility.
This therapy may also be given in conjunction with curative treatment. The plan includes medical (doctors, nurses) and non-medical (spiritual, social) care. Palliative care is usually planned for terminally ill patients, but this does not mean that patients receiving these services always have a short lifespan. Many patients can live for years with symptomatic treatment.
When Are We Discussing Advance Care Planning and with Whom?
Anyone can consider starting to discuss an advance care plan regardless of their medical condition. Even healthy adults may discuss future treatment plans for themselves, including considering and choosing who will be the health care proxy. However, there are some conditions that generally prompt people to think about this treatment plan, such as:
- Have advanced chronic disease
- Life expectancy is limited due to terminal illness according to the doctor
- There is a risk of developing dementia or related illnesses
Discussions are usually conducted with loved ones, doctors, and healthcare facilities that have palliative care services. For a plan to be legal, it may also be prepared and signed by a notary.
Who Is Involved in Determining the Therapy Plan?
The patients are the one who can make final decisions about curative or palliative treatment in advance care planning. In acute conditions, the patients need the expertise of doctors and medical teams who will help provide considerations regarding various therapies based on their needs and conditions. During the ACP process, patients can get information from doctors about numerous scenarios that may occur in the future, various treatment and therapy options that exist, as well as the risks and benefits. Patients can use this information as consideration in making plans. In addition, patients are encouraged to discuss with family members and closely related persons, so that they can understand what the patient’s values, hopes, and wishes are.
Quality of Life Versus Quantity of Life
Quality of life and quantity of life is one of the main ethical issues in nursing, especially when dealing with terminally ill patients who are on the verge of death. Quality of life refers to a standard of quality of life that is subjective to each individual. Meanwhile, quantity of life is definite because it refers to a person’s age or lifespan.
For example, a grandfather has advanced cancer. His age is estimated to be less than three months if he is treated in hospital. He refused to go to the hospital, but none of his family members could take care of him at home because of their busy life. He died a month later without proper treatment.
This means that the grandfather had a poor quantity of life as he died in less than three months because he was not hospitalized. On the other hand, his quality of life was also poor because there was no proper treatment at home before his death.
With advance care planning, a person can determine in advance the choice of quality and quantity of life. In this grandfather case, he can choose to be treated by a professional medical team at home to keep his quality of life as good as possible, even though his life expectancy is limited due to illness.
Reviewed by: dr Diah Martina, SpPD (PhD Candidate at Erasmus MC)