Advance Care Planning With Glioblastoma, as a Tool for Empowerment

Glioblastoma, a type of brain tumor, can quickly affect your ability to make important decisions, so it’s vital to determine your treatment and caregiving wishes early. Advance care planning can help you choose goals for your care and make sure your family and cancer team know what you want.

Although the emotions that glioblastoma brings can prompt some people to delay these decisions, it’s important to define and focus on your values, says Rebecca Joseph, a licensed social worker at the Rose Ella Burkhardt Brain Tumor and Neuro-Oncology Center at Cleveland Clinic in Ohio. Starting these conversations early can be a gift to yourself and your caregivers.

A good first step in advance care planning is to think about your values and wishes — how you’d like your medical care to be handled should you become unable to make these decisions or communicate them in the future.

• Whether you’d want to preserve quality of life over life-sustaining treatments
• Whether you want to prolong life as long as possible with available interventions
• Whether you’d like to donate organs or contribute to medical research
• Any important events you’d like to reach or tasks you want to finish
• How your faith or spirituality are reflected and honored at the end of life

There are no right or wrong answers. Values and goals are different for everyone, depending on their life experiences and beliefs.

As you reflect on your wishes, you may want to include your family, caretakers, or other loved ones. You can start this conversation on your own, or you can ask to meet with a healthcare provider who can guide the discussion. Think about where you would feel most comfortable — your living room versus an exam room with your doctor, for example.

“Once a person views end-of-life care planning as a gift to themselves and their family, their remaining journey can truly be transformed from anxiety to peace of mind,” says Jeffrey Paparone, chaplain at City of Hope Cancer Center Phoenix in Goodyear, Arizona.

In these conversations, you can also include plans for support at home, Joseph says. This could mean lining up caregivers you’re comfortable with and making plans to give your caregivers plenty of support themselves.

• Living Will This document explains which life-sustaining procedures you consent to and which you do not, if you cannot otherwise communicate your wishes. It is a type of advance directive, meaning it takes effect only when you cannot provide direction.

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• Healthcare Proxy Also known as a durable power of attorney for healthcare, this advance directive allows another person to make healthcare decisions if you can’t. You can use it in place of or in addition to a living will.

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• Do Not Resuscitate (DNR) If you have completed a DNR form, emergency and healthcare workers will not perform CPR to resuscitate you if your heart stops.
• Organ Donation If you would like to donate your organs and tissues after you die, this form allows your healthcare team to contact an organ donation team at the right time.
• Physician Orders for Scope of Treatment (POLST) The POLST document tells healthcare providers how to handle a medical crisis. It is similar to a living will or a DNR but serves as a doctor’s order and includes more details. Not all states have them; you can see if yours does on the National POLST Collaborative’s website. In some states, they are called medical orders for life-sustaining treatment (MOLST).

It’s important to think about advance care planning documents before you actually need them, Paparone says. People may not complete the forms because they do not want to allow “negative” thoughts or actions to drive their outcome of care, he says. Others worry that if they complete the documents or even have a discussion, they will invite death faster.

“Nineteen years of experience tells me people do not complete their end-of-life care documents for fear of allowing death into their new reality,” he says.

• Financial, insurance, and legal concerns, as well as questions you might have about your job
• Physical needs, such as pain management
• Caregiver needs
• Emotional concerns, such as dealing with fear or depression
• Spiritual questions

“An integrated multidisciplinary approach to advance care planning can enhance planning discussions and support for the patient, caregiver, and family,” Joseph says.

As your disease progresses or your condition changes, you may need to revisit your advance care plan.

• Changes in how the cancer is progressing
• Sudden change in your ability to care for yourself
• The need for new or additional caregivers
• Desire to add different or new goals

“Facing a glioblastoma diagnosis often changes how we value time and the moments we share,” Joseph says. “Cherishing time spent with loved ones [and] finding comfort and meaning can bring hope and a greater quality of life to the patient and their loved ones.”

• Advance care planning with glioblastoma is a critical step in ensuring that you and your caregivers align on your treatment goals and wishes.
• Documents such as a living will and healthcare proxy can give you peace of mind that you will receive medical care exactly how you want to, even when you are unable to make decisions for yourself.
• Your plan may include palliative care — a care plan that is not designed to cure your condition but instead focuses on your quality of life and addresses practical, physical, emotional, and caregiver needs.
• Coordinate changes in your care plan with your healthcare team, and remember that adjustments may occur as your condition changes.