Advance care planning, also known as living will or advance directive, is a summary of the treatments that a patient would like the healthcare team to follow if he or she should become incapacitated to the extent that communication cannot take place.

While it is important that treatment options be discussed during the whole illness voyage, this specific task focuses on future treatment choices, at times of grave illness. It may include stating in what situations dialysis treatments are to be withheld or stopped completely. Other topics may cover when to use a breathing machine, or perform external chest compressions when the heart stops. It may also include documentation of care at the end of life, describing how much pain control is to be provided or whether any newly arising health conditions are to be treated at this stage of life. As a chronic illness progresses, the needs change.

It is useful to recognize that these goals include not just the treatment decision itself but the beginning of an ongoing profound conversation that is to occur with one’s closest family members and health care providers. These discussions have many advantages:

  • Patients and family members may feel relieved, knowing that they can share with each other topics involving quality of life desires, end of life care and values placed on treatments during serious illnesses. Neither person is alone with the burden of responsibility for these grave decisions. The majority of people are comfortable with these discussions, grateful that they can define their future dying experience.
  • These discussions will reassure patients that their wishes have been understood, communicated to the relevant people and will be respected when they may become incapable of making decisions or communicating them.
  • When there is a large family, conflict may arise among the members as they each try to advocate for what they perceive would be the desired course of therapy. If these decisions are discussed earlier, with all involved members, then there is a greater likelihood of agreement on the major health care needs.

It is also important to recognize that:

  • These decisions are not “carved in stone”. Patients may change their wishes at any time, in response to how they are feeling at different stages of their illness. In fact, it is a very difficult process trying to imagine what care to ask for when different grave illnesses may befall us during our kidney illness trajectory. At all times, communicate these changes to your family and health care team members.
  • Occasionally requested care cannot be provided, e.g. a patient’s health condition is so serious that dialysis treatments cannot be safely continued.
  • On the other hand, the patient’s expressed refusal of any therapy is respected by the health care team, taking precedence over anyone else’s wishes.
  • A copy of the document should be placed in the patient’s chart.
  • Here we are discussing power of attorney for personal care. There is a separate document, which spells out the role and regulations governing power of attorney for property, which mainly involves financial matters.
  • Irrespective of what care is declined at stages of serious illness, patients will continue to receive active management, by the whole healthcare team, of any pain or other uncomfortable symptoms, irrespective of the degree of illness.

Substitute decision maker

Also called the proxy decision maker, this individual has been clearly identified by the patient as the one who will speak on his or her behalf in situations when patient communication cannot take place.

This is necessary as it is very difficult to document, ahead of time, all the possible eventualities and the desired treatment. Someone with knowledge of the patient’s wishes, beliefs and values, needs to be identified. That individual may not necessarily agree with the decisions of the patient and may even end up in a position of conflict with other family members. However it is important for them to be able to communicate the patient’s wishes concerning foreseen and unforeseen illness, when the patient cannot further communicate those decisions.

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