Whether you're the doctor or the patient, having conversations about future care should be an integral part of the overall treatment planning process at every stage -- beginning at the time of diagnosis. It's a team effort and a partnership that ensures patient choices are given the utmost respect.
Steps for planning
The following steps are by no means an exhaustive list for fully implementing the advance care planning process in one's specific medical situation, but it serves as a good starting point for the patient and health care provider.
1. Evaluate quality of life
For the patient -- Begin to think about what living with quality of life means to you. Discuss your thoughts with the people who would be involved in making decisions for you if you aren't able to make them yourself. This will ensure that care choices are made to support your quality of life in the way you'd like.
For the provider -- Ask patients what quality of life means to them. Explain their current treatment plan and the side effects involved in terms of these ideas. Also, talk about how possible life-prolonging treatments relate to the patient's concept of quality of life. Remember, often the patient is waiting for you as the professional to broach the subject of what they should do in end-of-life situations.
2. Identify a loved one who can make decisions
For the patient -- Which person in your life do you trust to understand what quality of life means to you, and would they be able to make these decisions if you aren't able to make them yourself?
Make sure this person is willing to take the responsibility of making decisions for you if need be and that he or she knows what's important to you in your care choices; don't assume.
For the provider -- Find out from patients the type of relationship they have with their "agent." Is this someone who would be available to make a decision quickly if possible? If not, is there someone else the patients would like to be informed if a quick decision is needed?
3. Complete the paperwork
For the patient -- Once you have made these important decisions and discussed these things with your loved ones and health care provider, it's important to complete the appropriate legal documents stating your wishes.
The Medical Power of Attorney and the Living Will are legally binding documents that state your wishes regarding who will make decisions for you, and what types of decisions will be made, in scenarios when you won't be able to make them for yourself.
For the provider -- Whether or not patients decide to complete the Medical Power of Attorney and Living Will, it's still important to document in the their medical record who they identified as their agent and what types of care they would want.
4. Adjust as the medical condition changes
For the patient -- Just because you make these important decisions at the beginning of your disease doesn't mean you can't change your mind later. Often, patients have to make the difficult decision between continuing with very rigorous treatment or stopping active treatment, and choosing options that manage symptoms and provide quality of life. Re-evaluate periodically with any major changes in your condition, as what's important to you in terms of quality of life.
For the provider -- Continue to have discussions with patients about how they would like to proceed with care at every stage. Discuss all the possible options for care with patients, whether it's active treatment, palliative care, watchful waiting, hospice or some other form of treatment. These conversations are never easy, but there are some resources available at MD Anderson and nationally (www.respectingchoices.org) that can help medical providers begin to talk about these issues with patients.
Filling out advance directive documents, signing them and including them in the medical record is such a small part of the overall process of advance care planning. Without discussion and collaboration between the medical team and the patient, the intent of the advance care planning concept could be overlooked.
The Psychosocial Council at MD Anderson includes members from all different disciplines in a patient's care. Currently, the council is implementing an advance care planning process that will focus on respecting patients' care choices throughout their cancer journey.
For additional information about completing advance directives, the advance care planning process, or to learn about the Psychosocial Council's work, contact the Department of Social Work at 713-792-6195.