Advance Care Planning

As medical technology advances, many diseases become curable or can be controlled. However, there is an end to everyone’s life. Some diseases will progress to a point when all treatments become futile. Yet, with modern medical technology, life-sustaining treatment (LST) (e.g. artificial ventilation, cardiopulmonary resuscitation, etc.) can still be applied to a dying patient with end stage disease. As the disease is irreversible, such treatment can only prolong the dying process which may be of little meaning to the patient, or even aggravate his/her suffering.

An Advance Care Planning (ACP) is a process of communication intended for mentally competent patients. Participation of family members is encouraged. The patient can express preferences for future medical or personal care, refusing life-sustaining treatment or making an advance directive (AD). Decision making regarding the patient’s future medical or personal care should be by consensus building among members of the healthcare team and with the patient’s family, based on the best interests of the patient.

The earlier one plans for the last stages of your life, the more time and space they will get to think clearly and rationally. With this important communication between one, one’s family and healthcare team, their wishes and goals of treatment can be expressed clearly. 

Advantages of Advance Care Planning:

• Offering a good chance for the patient and family to gain an in-depth understanding of the illness.
• Giving you and your family have a clearer understanding about end-of-life care
• Being able to have your own care needs met and having death-related pain reduced
• Making it easier for your family members to honour and realise the patient’s wishes
• Relieving the difficulties and pressure faced by family members when making life-and-death decisions, relieving the grief and suffering at the end-of-life
• Through open communication and acknowledging patient’s wish, avoiding future disagreement and conflicts 
• Promoting family relationships as family knows deeper about the patient and their wish

Parties involved in the ACP process include the patient, their family and healthcare workers.

Each patient's physical condition and needs are different, so will be the timing for discussing the ACP. The followings are some suggestions for the initiation of ACP:

• Significant decline in functional status and level of physical activity, or need to be institutionalised;
• Considerable discomfort in terms of physical and psychological symptoms, and social anxiety;
• Obvious commencement of the final stage, e.g. following multiple hospital admissions, recurrent acute episodes, having experienced an acute severe episode when death is imminent; and 
• Futility of disease targeted treatments established and transition from curative treatment to palliative care

The above may occur in the later stages of the disease. But in some diseases, ACP may be necessary shortly after diagnosis for:

• Dementia patients when they are still competent in the early stage;
• Cancer patients when the cancers have widely spread to other parts; and
• Some severe diseases such as motor neuron disease that may have a more rapid downhill course after diagnosis.

Ice breaking

• It is not good to discuss this…... or talk about it later.
  • The patient and family may be coy about the subject or lack the necessary skills, or worried about possible emotional outbursts resulting from discussion of the serious topic. Healthcare decision-making is a complicated process. It is advisable to make use of the appropriate time when the patient can make autonomous decisions before his/her illness progresses to an advanced stage.
• Will the patient become down and depressed?
  • Healthcare workers would conduct the discussion sensitivity with professional skills, avoiding a rigid or forcing approach.
  • Family may worry such discussions would cause a negative emotion on the patient. However, literatures reveal patients generally wish to know and want to be respected. Telling lies and withholding facts will make the patient feel uneasy, and cannot help them face the illness or plan for their life.
• Will the doctor give me up?
  • The answer is no. Health workers continue to take care of patients and try their best to relieve their pain and discomforts.
  • When dying is unavoidable, the care approach would change from curative to palliative, ensuring the patient a peaceful and respectful death.
• The doctor is too busy…
  • In a busy clinical environment, it is not easy to initiate ACP discussions. Special arrangement is needed for such a purpose and the discussion may not be one-off. All involved parties need to find a time for a throughout discussion on ACP.

Understanding the illness trajectories and deterioration rates of different diseases not only helps patients determine the right time to execute an ACP, but also enables them to better understand their unique care needs.

• Accident: People usually have very good functional status until their death due to accident.
• Advanced cancer: Patients with advanced cancer usually have good general condition to start with and can tolerate anti-cancer treatment. However, when disease progresses, as their general condition deteriorates, patients usually need more support and care.
• Chronic illness, such as kidney problem, liver impairment, respiratory disease or heart failure: It would be difficult to predict the life span and duration of care in this group of patients. These patients often have exacerbations of their illness or acute on chronic episodes when they need hospitalisation. Every visit or stay at the hospital represents a deterioration in a patient’s ability to take care of themselves, as well as their physical condition.
• Illness due to frailty (e.g. Dementia, Parkinson’s disease): The general conditions of this group of patients are poor in general. Their activities of daily living are often dependent on their families and carers. Most of them typically succumb to otherwise-minor accidents such as falls or complications from other illnesses like pneumonia.

1. Understand your own wishes and needs
2. Discuss with your family about your wishes 
3. Communicate with the doctor openly
4. Follow-up after discussion on “Advance Care Planning”
5. Revise and update your plan regularly

Step 1: Understand your own wishes and needs

To make a good planning for care at the end-of-life, you need to know your illness and needs. Essential information include:

• Disease: disease anticipated progression and prognosis
• Preference for treatment:
  • Treatment goal: Whether to prolong survival or seeing comfort as the focus
  • Available treatment options: benefits and risks
• Care options
  • Type of care you want to receive, e.g. accompanied by family, tube-feeding
  • Where would you like to be cared for or to pass away?
• Life goals and wishes:
  • Examples: to talk to loved ones, solve a conflict, meet certain people, join your son or daughter’s wedding, organise finances, arrange your own funeral, etc.

Step 2: Discuss with your family about your wishes 

• It is recommended that you should discuss the topic with your family members first, before discussing with the doctor. 
• You need to understand your family's values, ideas and caring abilities.
• Families are important supporters. Whiling taking care of patients with advanced cancer, family members also face lots of pressure and challenges at the same time. 

Step 3: Communicate with your doctor openly

• After discussing with your family, you can tell your doctor about your wishes. There is no need to leave the discussion in the final stage of the illness.
• Before talking to the doctor, there are something to prepare beforehand:
  • Before meeting, use a notebook to write down the information and questions, so that it can be put forward during the meeting.
  • Make a formal appointment with the doctor (The doctor can be one who is most familiar with your condition, for example: a specialist in internal medicine, oncology, geriatrics or palliative care who has been following them up)
  • Choose a suitable date and time for discussion. Generally, such discussion takes around 45 to 90 minutes.
  • Invite relatives and friends as accompany for the discussion. (When you are unable to make medical decisions for yourself in the future, your relatives and friends will know your wishes.)
  • Suggested topics to discuss: illness and prognosis, treatment and care options, your own wishes and personal goals
  • During the discussion, tell the doctor the most important matters. Use a notebook to write down the important points.
  • If time is not enough for discussing all the details, you can arrange another appointment to discuss again.

Step 4: Follow-up after discussion on “Advance Care Planning”

• Details of the ACP discussion should be documented to facilitate continuity of care.
  • Healthcare workers will document the details of the ACP discussion, including the patient’s preference and choice. The results of the discussion will be documented. When you are seriously ill, or if you have lost the capacity to make decision, clinicians can refer to these records and provide appropriate care respecting your wish. 
• You may also want to complete an advance directive.

Step 5: Revise and update your plan regularly

• The ACP is an ongoing process. Consensus may not be reached with one single discussion.
• Review may be required when your condition or preference changes.

Hospital Authority: Advance Care Planning (ACP)? Advance Directives (AD)? Do-Not-Attempt Cardiopulmonary Resuscitation (DNACPR)? Patients and families should know more!

Videos

▶️ The Hong Kong Geriatrics Society: Advance care planning (Chinese version only)

▶️ Jockey Club End-of-Life Community Care Project: Introduction of Advance Care Planning (Chinese Version only)