ARTICLE | ADVANCE CARE PLANNING

The Vital Role of Family Caregivers in Advance Care Planning

Key Takeaways:

  • Family caregivers play a crucial role in advance care planning, leveraging their intimate understanding of the patient’s situation to guide the process effectively.

  • Caregivers can also be the catalyst for patients to initiate advance care planning, considering cultural and religious views in decision-making.

  • Advance care planning positively impacts quality of life and end-of-life care by preventing unwanted hospitalizations, increasing the use of palliative and hospice services, and reducing end-of-life care costs without compromising mortality rates.

  • The ianacare philosophy involves Care Navigators who facilitate early discussions, moderate and document planning, and ensure legal documents are in place, promoting better healthcare experiences and end-of-life care.

What is Advance Care Planning?

Advance care planning is often misunderstood as part of the end-of-life process. By definition, advance care planning is something intended to be completed before a diagnosis or critical illness/injury. Advance care planning is not a single decision, but a crucial process for adults at any point in life to prepare for the future.

This proactive approach lifts the burden on family care teams and loved ones should an illness or injury results in an inability to communicate. By documenting preferences, the patient can also ensure their wishes are met, giving healthcare providers a blueprint for end-of-life care and treatment plans.


This can be done in a legal manner by completing an Advance Directive– including a living will and power of attorney.

  • Living will: A legal document that informs medical teams of treatment preferences in the event communication with patient isn’t possible. These documents often include specifics on what, if any, types of treatments should be avoided.
  • Power of Attorney: A legal document identifying a healthcare proxy. This is more than just the person who will communicate predetermined medical decisions, but someone who has the power to actually make decisions if and when necessary.

These documents should be reviewed with family members and providers periodically to ensure everyone has understood preferences, knows their role, and has the opportunity to ask questions.

The Role of Family Care Teams

Family care teams, already deeply involved in the patient’s care, play a central role in advance care planning. Their intimate understanding of the patient’s situation, preferences, and history makes them well-equipped to guide the planning process effectively. In many cases, the primary family caregiver serves as the patient’s power of attorney and agent, consolidating these plans within the dynamics of the family. 

While documenting these processes and wishes can help alleviate disagreements or competition within a family dynamic, in intense moments where the outcome is unknown and emotions flare, having legal documents ensures there is a bottom line a proxy or family member can point to, to avoid conflict.

Primary caregivers can also be the impetus for a patient to begin advance care planning. While it’s common for care recipients to avoid thinking about end-of-life, caregivers are acutely aware of the medical and legal involvement when medical incidents or emergency department visits occur.

In addition, a patient’s wishes may be shaped by cultural or religious views. Family care teams can assist providers in filling any gaps or making additional decisions if needed while the care plan evolves, and ensure that they meet the patient’s cultural and religious wishes.

Why Advance Care Planning is Critical

Advance care planning positively impacts quality of life and end-of-life care by preventing unwanted hospitalizations and increasing the use of palliative and hospice services. It reduces end-of-life care costs without compromising mortality rates. For individuals with dementia, planning allows them to express their care preferences before cognitive decline impedes decision-making, a comfort to family members who may hesitate to make decisions while their loved one is still lucid but not themselves. The benefits of advance care planning extend to high-risk, high-needs patients, improving outcomes, patient experience, and reducing health-related costs.

While documenting these processes and wishes can help alleviate disagreements or competition within a family dynamic, in intense moments where the outcome is unknown and emotions flare, having legal documents ensures there is a bottom line a proxy or family member can point to, to avoid conflict.

Primary caregivers can also be the impetus for a patient to begin advance care planning. While it’s common for care recipients to avoid thinking about end-of-life, caregivers are acutely aware of the medical and legal involvement when medical incidents or emergency department visits occur.

In addition, a patient’s wishes may be shaped by cultural or religious views. Family care teams can assist providers in filling any gaps or making additional decisions if needed while the care plan evolves, and ensure that they meet the patient’s cultural and religious wishes.

The ianacare Philosophy

The ianacare philosophy involves Care Navigators who prompt families to begin discussing advance care planning early and often. These Navigators are trained to assist in moderating and documenting these discussions, and helping family care teams ensure they have all legal documents in place. As the care journey progresses, Navigators take the lead to ensure necessary changes are implemented.

In conclusion, the involvement of family care teams is paramount for successful advance care planning. Recognizing the pivotal role of caregivers in initiating, understanding, and executing these plans ensures that individuals are well-prepared for future medical decisions, irrespective of their current health stage. Family care teams, equipped with their unique insights, contribute significantly to the effectiveness and relevance of advance care planning, promoting better end-of-life care and enhancing the overall healthcare experience.

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