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Advanced care planning is important, and not only for cancer patients

Thinking ahead = Peace of mind

Jennifer Griggs, M.D., MPH
Jennifer J. Griggs, M.D., MPH

For many, a cancer diagnosis may be the first time a person stops to think about what it means to have a serious illness. Before the diagnosis, there was no reason to contemplate end-of-life wishes, let alone put together the legal paperwork to make those wishes official.

Studies show that not being clear about your preferences for medical care can cause stress on both the patient and family members. This is stress that can be avoided.

We sat down with Jennifer Griggs, M.D., MPH, director of the Michigan Oncology Quality Consortium, to understand more about advance care planning, why it is important and what can be gained by making end-of-life decisions well before they are needed.

Q. Why is it important for people with cancer to know about advance care planning?

It’s not just important for people with cancer. It is important for everyone. Any big medical event, such as a cancer diagnosis, is a good time to remember that any and all decisions about your medical care should be made in the context of your personal values and preferences.

Advance care planning is defined as a process that supports adults (at any age or stage of health) in understanding and sharing personal values, life goals and preferences regarding future medical care. The goal is to get the kind of care you want during serious and chronic illness.

This may include choosing and preparing another trusted person to make your medical decisions in the event you cannot.

The key is that advance care planning is exactly that: planning in advance. This gives you a sense of control and a sense of calm.

Another key point is that advance care planning does not bring about the end of your life. There is actually some evidence that creating a plan, talking over your wishes, and communicating your goals and philosophy for living can prolong your life.

My view is that talking about some of the things that can seem frightening actually shines a light into the dark corners. Once we do so, we can see that there is nothing there to scare us.

The light brings clarity.

I’ve had patients who have made all their plans when they feel well -- for guardianship of their children, their funeral, who will clean their houses so as not to leave that work for their family -- tell me that they have never felt more free.

Q. Why is advance care planning an ethical issue?

There are many theories to support why advance care planning is about ethics, but it comes down to doctors doing the best job when they treat patients in line with their wishes. It removes the likelihood of undertreatment or overtreatment. And, it’s key to remember the fact that abiding by a patient’s wishes reduces the burden and conflict for the patient and family members during a difficult time.

Advance care planning can help people maintain independence, alleviate physical suffering and ensure that their religious and spiritual needs are fulfilled.

Only 20% of patients have an advance directive documenting their wishes. Of those without a directive on file, 60% were unfamiliar with what it was, 14% thought they were too young and healthy to need one and 11% didn’t understand the document.

Source: American Medical Association, Feb. 13, 2020

Q. How can people get started with an advance care plan that’s right for them?

The first thing patients can think about is whether they can answer the following question: If you were to get very sick, is there anyone you trust to make medical decisions for you, and have you talked to this person about what is important to you?

It can be difficult to think about, but here is what I advise: Because of illness or accident, most people become unable to make their own medical decisions at some time in their lives. Making decisions for someone else can be very stressful if you don’t know their wishes. Talking about it ahead of time gives everyone peace of mind.

Q. If a patient is ready to put their advance care plan in writing to make it legal, how do they proceed?

In Michigan, we have two kinds of advance directives, the legal documents in your advance care plan. One is the Durable Power of Attorney for Healthcare. The other is a Do-Not-Resuscitate Declaration.

The Durable Power of Attorney for Healthcare names the person you choose to make medical decisions for you, called a proxy or patient advocate. This person should know your health care wishes. Some people use a document called a Living Will to help outline these wishes.

The Do-Not-Resuscitate Declaration is a form to alert your doctors if you do not want to receive CPR or other measures after a cardiac arrest.

Once the forms are complete and signed by you and your patient advocate, you should give copies of your advance care planning forms to your patient advocate and your doctor to keep in your medical record.

Q. Where can patients find these forms and what if they need help filling them out?

The forms can be found online by typing “advance directive” and your state into a search engine like Google. Michigan Medicine also has forms on its website. We’ve included a list on this page with websites that are helpful.

If you feel like you need more help to understand the forms or the process, the Rogel Cancer Center social workers can help. Social workers are part of your treatment team and can provide emotional and social support to patients and families.

Patients can also visit the Patient Assistance Center, located on level 1, room 1139 of the Rogel Cancer Center. The PAC is staffed with social workers who specialize in the unique needs of cancer patients.

Additional information and resources about advanced care planning:

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Thrive Issue: 
Spring, 2020