Family dynamics in palliative care: Building unity during difficult times

When a person with a serious illness begins palliative care, their family is often faced with a situation that can be both overwhelming and challenging. While this shared journey can bring a family closer together, it may also introduce tension and emotional challenges or even intensify past or ongoing conflicts.

If your family is currently involved in palliative care, knowing how to best work together during this period of time can help you stay focused on what matters most — caring for your loved one.
 

What drives family tension when facing a serious illness

In palliative care, the family often becomes an extension of the medical team, providing comfort, support, and guidance. But with illness often comes stress, which can disrupt existing family dynamics.

Family caregiver responsibilities are often numerous and can range from advocating for care and managing medical bills to keeping track of appointments and administering medications — and everything in between. The amount of responsibility often leads to family members each taking on a different role, some more involved than others, creating interactions that can either strengthen or strain relationships.

Dr. Wendy Siemion, a board-certified palliative care physician with Carelon Palliative Care, points out that “There definitely can be disagreements because family members don’t always agree on the care plan and may want to take different approaches. In addition, especially in the end stages of illness, the patient tends to want to please each person in the family. That can cause strife and conflict when not everyone is on the same page about the next best step.”

According to Dr. Siemion, some additional caregiver challenges may include:

• Preexisting family conflicts that resurface due to the stress of caregiving.
• The feeling of unequal caregiving duties amongst the family.
• Mental and financial stress from the cost of care.

Addressing these challenges requires establishing a solid foundation of support and communication, both within the family and with help from palliative care providers.
 

The management of family conflict

Families often aren’t thinking about family dynamics in the middle of a crisis or when a loved one first enters palliative care. Oftentimes it’s the palliative care provider who makes the initial and intentional step to make sure the family is functioning as one unit with as little conflict as possible.

“When it comes to family caregiving, the ‘family meeting’ is the tool of choice for a palliative care provider,” Siemion says. “By getting the family into one room with the care provider leading the conversation, everyone has a safe space to ask questions and be heard, listen, and hopefully work through — and overcome — the challenges together.”

In addition to family meetings, she recommends the following approaches and family palliative care resources to help alleviate stress and overcome differences:

1. Be proactive with advance care planning

According to Siemion, “Advance care planning is one of the best things a family can do to alleviate future stress. It’s something we like to do with all patients and families at any stage of disease. Having a care plan in place — before it’s needed — can set patient expectations and reduce family uncertainty and conflict.”

This process involves discussing everyone’s care preferences before a crisis, helping:

• Clarify values and goals.
• Designate caregiving roles and responsibilities.
• Encourage open discussions about treatment and end-of-life choices.

“Tools like the Five Wishes  document can guide families in these conversations, ensuring that patient wishes are respected and included in care decisions. From identifying the person who can make care decisions for you to how you want people to treat you, this document acts as a roadmap and can add peace of mind for both the patient and the family,” adds Siemion.

2. Focus on effective communication and conflict resolution

Good communication is key to managing family dynamics and handling conflicts. Strategies to promote healthy interactions within the family include:

• Designating a “point person” within the family for consistent decision-making.
• Encouraging open, honest conversations and active listening so everyone can speak without interruption during structured family meetings.
• Seeking support and different perspectives from palliative care teams, including social workers and chaplains.

Open and ongoing conversations help align family goals with patient care and address any differences in a supportive manner.

3. Seek out family caregiver support to address emotional history

Unresolved issues over the years are likely to reappear during times of stress. However, acknowledging them instead of ignoring them can help create a path to healing. Families are encouraged to focus on emotional comfort and support by:

• Participating in therapy or support groups tailored to caregiver stress.
• Opening up about their fears and past influences that could be affecting their care decisions.
• Talking with the care team to gain diverse perspectives.

Creating an environment where family members feel safe discussing emotions with healthcare providers helps break down barriers and promotes healing communication. Dr. Siemion has seen families come together in the worst of circumstances because of the support they had from the palliative care team and their willingness to come together. “By understanding family dynamics and the challenges of dealing with a serious illness, families can unite to support each other and their loved one during this deeply meaningful phase of life.”