When it comes to those we love, talking about plans for end-of-life care or specialty care services like hospice can be difficult.
Desirae Toomey, Director of Clinical Growth & Innovation for Avera@Home, advocates for pushing through the discomfort and fear because there is peace of mind on the other side of that hard conversation.
Is It Too Early to Talk About Hospice?
“Hospice is designed to be a service available to people for months and not just days,” said Toomey. “The sooner we think and talk about what’s important to an individual, the better we’re able to make their wishes and their vision of what good care looks like come true for them.”
The topic is heavy on people’s hearts and minds whether they talk about it at all, so it’s worthwhile to brave the conversation early on, according to Toomey.
“Although it’s scary, there is a lot of beauty, a lot of peace, a lot of quality time that comes after that really hard conversation,” Toomey said.
How Do You Start the Conversation?
Toomey said you can’t go wrong however you choose to broach the topic of hospice.
“At any point in any conversation with any member of your health care team, you can stop and say, ‘When is the right time to talk about comfort-focused care?’” said Toomey.
Though primary care visits are a great opportunity to begin the conversation, it’s not the only option.
“Whether you show up to the hospital or the ER or you’re with your primary care physician, there’s never a wrong time to pause and say, ‘Are all of these things we’re doing in the best interest of my loved one?’’’ said Toomey.
Getting Help From Medical and Palliative Care Professionals
The hospice conversation can be easier for families to navigate if they seek opinions from professionals.
Physicians can weigh in on whether everything possible has been done medically, and palliative care team members can answer questions about quality of life and symptom relief.
Ultimately, hospice specialists like the team at Avera@Home are the experts when someone’s facing life-altering health care decisions or changing direction to comfort-focused care.
“We get an opportunity to take a lot of the burdens of the what-ifs away because we know how to answer those,” said Toomey.
Read more: Helping Loved Ones Through Transitions in Care
What Does the Conversation Look Like?
“Every clinic and every provider will have a different set of tools to help answer some important questions, but because the conversation is really individual based, we do our best work one on one, sitting at your home, having the conversation,” said Toomey.
The choice of how to initiate the conversation is different for every family. Some families may wish to have the conversation when everyone is gathered for a holiday or special event, like Toomey chose to do with her grandmother at Thanksgiving.
“My family is a little bit spread out, so it allowed us to have that really beautiful day together but also have a conversation with my grandma about what was important to her,” said Toomey.
For those who wish to include loved ones from a distance, Avera@Home specialists offer video calls and phone calls, allowing them to facilitate the conversation thousands of miles away.
“Space and distance are never barriers for us,” Toomey said.
Questions to Ask in End-of-Life Discussion
Some questions to consider when discussing your loved one’s goals and preferences might include:
- How does your loved one want to spend their last days?
- What is most important to your loved one — being comfortable, being awake and alert, being able to spend time outside in nature, being able to travel to see loved ones?
- Does your loved one have any wishes they want to fulfill, such as taking a trip or gathering the family?
- Does your loved one want to stay in their home? Is there somewhere else your loved one would want to receive their care, like a facility or another family member’s home?
Letting Families Lead End-of-Life Discussion
For a health care team to provide the best care, it’s important that patients and their loved ones feel comfortable and encouraged to voice their specific wishes, even when that means changing direction or shifting goals of care.
“We really rely on the family to say, ‘Hold on. This is not the direction I want for my care’ or ‘I want something different for my life or for my comfort or for my loved one,’” said Toomey.
“We see the best outcomes when people feel empowered to advocate for their loved one,” said Toomey.
