Hospice care uses a team-oriented approach to medical care, pain management and emotional support for patients facing a terminal illness. This support system is extended to their loved ones as well, as many family caregivers rely on clinicians to initiate family discussions about end-of-life care.
Most patients use this time to share physical and spiritual wishes that may not have otherwise been known without the discussion. But, not all families feel comfortable having open conversations about mortality. In fact, some families attempt to avoid the subject altogether – asking health providers not to mention end-of-life care in front of the patient or tell their loved one they’re terminal.
The Underlying Issue
Their intentions aren’t necessarily bad. After all, family members don’t want to think about death or being separated from their loved one. But, the problem is that too many people are starting hospice care in the latest stage of their illness.
As a result, patients and their families are missing out on the emotional benefits hospice offers as well as the expert care that assists with pain and symptom management.
According to Dr. Block, chair of the Department of Psychosocial Oncology and Palliative Care at Dana-Farber, “The average time the first conversation about end-of-life is 33 days before death. That’s really late when you think about how much people have to come to terms with emotionally, as well as the practical issues and making decisions about next steps.”
Scheduling medical appointments, gathering important documents and coordinating transportation are a lot of factors to juggle as you’re psychologically coming to terms with a loved one’s illness.
At the end of the day, the most important thing is helping them live out their last days with comfort and dignity. But, breaking the news to siblings and other family members can be difficult.
A study led by Pruchno RA, Burant CJ and Peters ND found that families who are able to quickly achieve consensus regarding the decision have open and regular family interaction and communication.
Caregivers in families that have difficulty reaching agreements reported greater problems with the patient’s behavior. Research has also uncovered that families with a prior history of communication constraint were more likely to experience conflict.
The Reason We Fear the Discussion
The most common objection to having the hospice discussion is fear. Siblings are worried about losing their parents too soon and don’t want to acknowledge any signs of “giving up.” But, that very language can be turned around in favor of hospice care.
It’s not a conversation of “letting go.” Rather, it’s being proactive about making your loved one’s time as comfortable as possible. It’s about focusing on the time they have left and helping them live in a way that preserves their dignity.
How to Talk About Hospice Care
You don’t need to unravel everything in a single conversation. Often times, it’s found to be more effective to discuss hospice over a series of discussions – to find a solution that best aligns the patient’s values and goals. Here are some topics that will help you approach the subject of hospice care with your siblings.
- Identify the decision maker(s) – “Who should be there with us when we discuss the results?”
- Gain a practical understanding of the illness – “What have other doctors told you about the condition? What will change over the next weeks or months?”
- Define your parent’s goals – “What do they hope for most? Is there anything that they’re afraid of?”
- Identify their care needs – “What kinds and levels of help will they need at home?”
- Link their goals and care needs – “Their main goal is to stay at home. To do that, we will need to send a nurse out to provide some help. Is that right?”
- Introduce hospice care – “Have you heard of hospice? It can provide more services and support than most home-care programs.”
- Acknowledge emotional responses – “I can see that you’re upset. I can imagine how difficult this must be for you right now.”
- Explore their concerns – “Tell me what’s upsetting you the most.”
- Explain hospice goals – “Hospice isn’t giving up. It’ll help improve our parent’s quality of life as much as possible in their last days.
- Reassure and recommend – “Let’s think about it for a day or two. It can be helpful, but I realize it’s a big decision. Would you like to visit with a hospice nurse to ask some more questions?
How to Frame the Conversation
Try to make sure the whole family is on board and understands how hospice care can provide pain management and emotional support. Hospice care isn’t meant to cure a terminal illness, but to help your loved one live out their days as pain-free as possible.
If needed, try to have the conversation together with a hospice service provider in an informal visit. They’ll be able to answer your questions and address any immediate concerns.
If you haven’t discussed hospice care with your family, it should be considered as it appears that medical options may soon be exhausted or your loved one desires to stop seeking a cure. The sooner family members can come together and educate themselves on hospice, the sooner their loved one can receive the benefits of expert and compassionate care.
To learn more about hospice care and the services involved, reach out to us today at (405) 360-2400 in Norman and (580) 332-6900 in Ada. We proudly serve various counties in Oklahoma including Canadian, Grady, Oklahoma, Cleveland, McLain, Garvin, Murray, Carter, Lincoln, Pottawatomie, Pontotoc, Johnson, Seminole, Hughes, Coal, Pittsburg and Atoka.
Is it time to start hospice care?
Our guide can help you navigate all the important components of hospice care for your family, download now.