The Caregiver's Cairn: Goals of Care

Blog by Jane Barton

Greetings one and all...

Welcome back to The Caregiver’s Cairn - a sustaining and empowering guide for caregivers and care receivers. I hope you and yours have enjoyed a lovely month since my last posting. I invite you to pour a cup of coffee or hot tea, curl up in a cozy chair, and take a deep breath. Let’s chat about an important aspect of caregiving today - goals of care.

What are goals of care? Goals of care are the guideposts that serve to keep us on track throughout the caregiving journey. With all of the options available today related to medical interventions and health care services, we can be easily overwhelmed with the myriad of possibilities. So, based on our understanding of the situation, we establish goals of care predicated on our needs, wants, hopes, and fears to facilitate the planning process. Our goals of care not only reflect our understanding of the diagnosis and prognosis but also of our role in the caregiving scenario. Ultimately, the goals of care serve as the foundation for the plan of care. Thus, by investing the needed time and attention to discuss, to develop, and to monitor the goals of care, we will reap beneficial dividends from an effective and appropriate plan of care.

After establishing the initial goals of care, don’t become complacent. This is an iterative process. Goals of care change as the physical, cognitive, psychosocial, and financial conditions of the care receiver and caregiver(s) change. When should we revisit goals of care? Gather those involved for a chat when there is a -

• Change in health status of care receiver—for better or worse!
• Change in life expectancy—increased or decreased.
• Change in care setting.
• Change in decisional capacity of care receiver.
• Change in treatment preferences.

After revising goals of care, consider revisiting the plan of care. As noted previously, goals of care drive the plan of care. Be aware of the ripple effect resulting from any tweaking done to the goals of care.

It is not uncommon for family members to engage in heated debates about the goals of care. Each person has a unique perspective (i.e. role) and understanding of the situation. Consequently, we see things differently. Consider this scenario. When confronted by a terminal recurrence of cancer, a woman who has endured years of aggressive treatments for cancer may have different goals of care than her family. Perhaps the woman opts for quality of life instead of quantity of life by refusing additional chemotherapy treatments. Her family is diametrically opposed to this goal of care. Instead, quantity of life is the family’s primary goal of care thus necessitating additional treatments. There is no right or wrong answer in this situation. The primary goal of care reflects what each person in the scenario needs, wants, hopes, and fears. When families reach such an impasse, instead of arguing, It is my belief that we are better served by listening. By understanding the motivating factors of the differing opinions, we can then seek common ground. A good thing indeed!

Thanks so much for stopping by today. I invite you to share your perspective on the caregiving journey. Make suggestions. Pose questions. Provide resources. Share your story. Coming together and sharing, we will improve the process for one and all. I look forward to continuing the conversation next month. Til then, blessings to you and yours...Jane W. Barton

Do you have a question for Jane? Please email us at coaarp@aarp.org and we will be in touch soon!