Brief definition. Advance care planning is an individual’s thinking and discussing with his or her family and other people close to them(1) with the support as necessary of healthcare providers(2) who have established a trusting relationship with the individual concerning preparations for the future: his or her current state of health and future way of life and medical treatment and care that the individual wishes to receive in the future.

Consideration for vulnerable individuals. In particular, for people who are finding it increasingly difficult or who hesitate to express in words their preparations for the future, or who have no family or other parties with whom to discuss these matters, healthcare providers should engage in a continuous dialogue to elicit as much as possible the individual’s values and provide suitable support.

Purpose of advance care planning. When individuals find it difficult to make decisions by themselves, their family and the healthcare providers engage in discussions based on statements the individual has made in the past regarding preparations for the future, with the aim of respecting the individual’s values and providing medical treatment and care that reflects the individual’s intentions.

⁽¹⁾Hereinafter “the family”; ⁽²⁾The medical, nursing, and welfare services staff in charge of the individual’s medical treatment and care.

To prepare for the future means the following things:

Individuals’ values. It means for individuals to imagine, looking back on their life thus far, what kind of person they would like to be and what kind of life they would like to lead henceforth. It means for them to consider, in order to achieve these aspirations, what their preoccupations and anxieties are and what they regard as lastingly important.

Individuals’ health status. It means to be aware of and accept one’s present and expected future state of health and one’s prospects in regard to illness, injury, and ensuing disabilities.

Individuals’ ways of living and their wish to receive medical treatment and care until the last stages of life. It means imagining where, with whom, and how one wishes to live in the last stages of life. It means thinking about what types of medical treatment and care one wishes to have and what types one wishes not to have, in order to realize, to the greatest possible degree until the last moments of one’s life, the kind of life one wants to lead — including the conditions under which one wishes or not to receive those medical treatments and care.

Choice of a trusted partner. It means to take into consideration the choice of a trusted partner(3) who, when it has become too difficult to decide one’s intention(s) oneself, will act on one’s behalf to ensure that one’s intention(s) will be reflected in discussions with healthcare providers. One’s chosen trusted partners will attempt to represent one’s intentions, and only when one’s intentions are unclear will they make inferences and discuss one’s intentions with healthcare providers to make medical treatment and care choices based on one’s values.

⁽³⁾Trusted partners are normally chosen from among family members. Here the term “trusted partner” is used, although elsewhere other terms such as “spokesperson” and “substitute decision maker” are used by specialists or organizations.

All adults ready to engage in advance care planning. Any adult who is ready and willing to undergo advance care planning is the subject of advance care planning.

In particular, advance care planning is recommended for people with existing or potential physical or mental status changes or changes in their living environment, as in the following cases:

Older frail adults. Anyone of advanced age who feels the effects of aging more markedly than they did before (for example, if they feel that they are losing weight, getting tired more easily, becoming weaker, walking more slowly, or becoming less active);

Older ill adults. Anyone of advanced age who goes regularly to see a doctor or who is under treatment in a hospital for an illness or injury;

Adults with a chronic health problem. Anyone with a physical, intellectual, or psychiatric disability as a result of illness or injury who may suffer deterioration in their physical functions or capacity to make decisions with worsening of their disability;

Adults receiving facility and home care. Anyone who will be admitted to a nursing care facility or receive home medical or nursing care or who is already receiving such services.

Consideration for individuals reluctant to discuss advance care planning. For people who are reluctant to discuss advance care planning, the healthcare providers need first to build a trusting relationship and, on that basis, to probe the reasons for their reluctance, and then to sit down to talk with them about when is the most appropriate time to begin discussions and what to discuss.

It is recommended that individuals make preparations for the future upon accepting the state of their health and thinking about how they would like to live henceforth and until the last stages of their life, and about the medical treatment and care they desire. People who have experience caregiving for family members or keeping company with a dying family member until the end, by recalling this experience and preemptively imagining themselves in the same position, hold the key to preparations for their own future.

It is recommended that individuals decide to discuss their preparations for the future with their family. People who have experienced family caregiving or being with a dying family member until the end will share their thoughts with others based on their direct experience. However, when individuals are conscious of the need to communicate these things but fail to find someone with whom to talk, it is recommended that they seek advice about with whom and how to discuss preparations for the future from their primary-care physician or the nursing and welfare facility staff they regularly see.

How to choose a trusted partner. To prepare for a time when it will become too difficult for individuals to make decisions, they are advised to choose in advance from among their family a trusted partner with whom they have discussed these matters and who will speak on their behalf with the healthcare providers. If they wish to delegate to the trusted partner the power to make decisions on their behalf, it is recommended that they communicate this intention to the trusted partner in advance.

Roles of a trusted partner when intentions cannot be realized. It sometimes turns out to be too difficult actually to put into practice previously established preparations for the future. This happens, for example, when one can no longer live at home as one hoped to do. In this case, healthcare providers and one’s trusted partners try to offer the second-best treatment and care that respects the individual’s wishes to the maximum feasible degree. Individuals and their trusted partners ought to discuss beforehand the possibility of this occurrence.

It is recommended that healthcare providers harness their respective areas of expertise and their ties with each other to comprehend from different standpoints the individual’s personal values. On this basis healthcare providers will assist in preparations for the future both by providing information about available medical treatments and care and by helping individuals to consider how to live in the future and to imagine concretely the final stages of their life.

Supporting discussions with individuals. It is recommended that healthcare providers establish a trusting relationship with individuals and create opportunities for discussions with those individuals and their family about preparing for the future. They will help the family to understand well and accept the individual’s preparations for the future.

Supporting discussions with solitary individuals. In the case of individuals who have no family with whom to discuss preparations for the future, if the individual so desires, trusted healthcare providers will serve as interlocutors in discussions regarding preparations for the future.

Supporting discussions with hesitant individuals. In the case of individuals who hesitate to put their preparations for the future into words, the family and the healthcare providers will try to grasp through persistent dialogue with the individual his or her reasons for hesitation and, with the individual’s consent, help them to express their feelings and personal values in words.

Discussing repeatedly. The outcome of any discussion is the individual’s will at that point in time; it may change. It is recommended that all parties (i.e., individuals, their family, and healthcare providers) have repeated discussions at every opportunity and revise their joint understanding of what has been confirmed in accordance with changes in the individual’s feelings and thoughts.

Discussing more details with end-of-life approaching. With changes in disease status or as the end of the individual’s life approaches and medical treatment and care become necessary, all parties will discuss increasingly specifically, if the individual so desires, the details of medical treatment and care.

Response when individuals’ cognitive capacity is declining. Should the individual’s condition worsen suddenly and cognitive capacity markedly decline, the healthcare providers and the individual’s trusted partners will make efforts to infer the individual’s will at that moment based on the tenor of previous discussions.

There are cases when individuals who are suddenly found to be in critical condition or to have markedly impaired cognitive function before discussions about preparations for the future take place. It is recommended that healthcare providers make efforts together with the family, or in some cases with neighbors or municipal staff providing livelihood support, to provide medical treatment and care that respects those individuals’ personal values by extrapolating those values from their way of life and their previous conversations.

Note: Though the contents of this section 10 are not included in the definition of Japan’s advance care planning, they are listed here among the action guidelines because such situations are often faced in decision making in the medical and nursing care setting.

General approach to record-keeping. It is recommended that records be kept as necessary of discussions regarding preparations for the future. It is recommended that records regarding specific items related to medical treatment and care be maintained, if possible, in a special written format(4). The drafting of these documents is not obligatory, nor do these documents have legally binding power; they may be revised at any time. One approach is to use forms prepared by a regularly visited medical institution or by a municipality or by an organization promoting living wills.

Purpose of records. When individuals become unable to communicate their wishes, the records and documents drafted based on previous discussions become the keystone enabling healthcare providers, in collaboration with the trusted partner, to deliver medical treatment and care reflecting the individual’s wishes.

Record-keeping for solitary individuals. For individuals who have no family with whom to discuss preparations for the future, healthcare providers can, if the individuals so desire, become interlocutors; it is best to take minutes of discussions.

Record-sharing among healthcare providers. It is recommended that healthcare providers keep in mind to describe the individual’s preparations for the future in the medical record, share them among staff members, and transmit them to any new person in charge.

⁽⁴⁾Special written format: e.g., advance directives such as “living wills” in which individuals record their future plans, or other medical forms in which medical practitioners record principally the life-support treatments to be provided to individuals who have life-threatening illnesses.