Assessing Quality of Life
There are two central concepts to bear in mind when assessing a patient’s quality of life: QOL is multidimensional and can only be truly determined by the patient. It is not up to providers to determine the quality of a patient’s life.
- QOL has physical, emotional, spiritual, functional, and social components.
- Assessing and understanding these early provides a picture of who the patient is, what matters to them, what limits them, and what goals of care are meaningful to them.
- Obtain information from caregivers and surrogates only if patients cannotspeak for themselves
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Functional |
How has your disease interfered with your daily activities? |
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Social |
How are you getting along with family and friends as a result of your illness? |
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Emotional |
Have you been feeling worried or sad about your illness? |
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Physical |
Have you been feeling sick or bedridden because of your illness? |
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Physical |
How much or which symptoms bother you the most? |
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Spiritual / existential |
How have your religious beliefs been affected by your illness? |
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Spiritual / existential |
Do you find yourself wondering what is the meaning of all this? |
Exploring Values and Goals of Care
Patients with serious illness often face difficult decisions regarding treatment and the possibility of trading quality of life for length or quantity of life. Many treatments, particularly in oncology, can potentially prolong life, while at the same time negatively impact quality of life. It is important to help a patient explore the balance between quality vs quantity of life to help determine GOC. Sample questions to explore values/goals:
- If you knew your life was coming to an end soon, would you be living it differently?
- What are your biggest worries about your health?
- What abilities, activities, or things are so important to you that life wouldn’t be worth living if you could not do them?
- If you were to become sicker, what sort of things are you willing to go through for the possibility of gaining more time?
- What if you had to endure ongoing discomfort from pain, dyspnea, thirst, or other symptoms for the possibility of gaining more time or to achieve your goal?
- How much have you spoken to your family about your values and wishes? Who in your family helps you make decisions about your health?
- Are you a religious or spiritual person? How do these beliefs guide your medical decision-making?
- If the patient is unable to speak for themselves, ask surrogates: What would your loved one think about their quality of life if they were permanently dependent on machines? If they had serious difficulty with doing daily activities, such as bathing, feeding themselves? If they were unable to communicate, make their own decisions, or were severely cognitively disabled?
References
Schuenmann LP, Arnold RM, White DB. “The Facilitated Values History.” American journal respiratory and critical care medicine, 2012. PMID: 22822020
Serious Illness Conversation Guide, accessible at
https://www.ariadnelabs.org/wp-content/uploads/sites/2/2017/05/SI-CG-2017-04-21_FINAL.pdf
Childer JW, Back AL, Tulsky JA, Arnold RM. “REMAP: A Framework for Goals of Care Conversations.” Journal of Oncology Practice, 2017. PMID: 28445100