Hospice Care: Why Do So Many Resist This Type of End-of-Life Care?

Too often, individuals facing end-of-life resist hospice care simply because they are uninformed or misinformed.

What is it about hospice care that leads so many to resist this type of end-of-life care?

Last week I wrote a post about why some caregivers wait to call in hospice. I offered the perspective that often it’s not the patient who has an issue moving forward with hospice care, but that many times it’s family members and caregivers who hesitate because they are reluctant to accept a terminal diagnosis. In response to my post, a number of hospice professionals offered their own perspectives on why hospice is frequently called in so late:

• A majority of caregivers and families wait to call in hospice because they just don’t know they can call sooner. It’s unfortunate, but many people are under the assumption that you have to be on death’s door before hospice can be called on to care for a patient.
• Waiting to call hospice also has to do with the grief process, which starts for some before the loved one has passed away. For those individuals, calling in hospice symbolizes giving up, and many want to make sure they do everything possible before getting to the point of calling in hospice.
• Some individuals are impacted by their doctors’ resistance to refer patients to hospice care. Physicians are focused on healing and treating, and some see calling in hospice as a sign of failure.
• There are also religious and cultural perspectives that keep people from calling in hospice. Some individuals feel they have a faith-based or culture-based obligation to do all they can to continue to seek medical treatments that might cure an illness or keep a patient alive longer.
• In some cases, families want to keep end-of-life care in the family. Those individuals take great pride in taking care of their loved ones until the very end.

So what can we do to ensure that patients, doctors, and caregivers don’t wait too long to call in hospice when hospice care is appropriate?

• Education is the key to helping people understand that hospice can be utilized when patients still have months to live. Beyond that, people need to understand the long-term positive impact of hospice care – that hospice is about living and quality of life.
• It’s also important for all of us to have frank conversations about death, dying, and the limitations of our medical technologies to extend life in all situations. While those are not easy discussions to have, it’s crucial that we talk about, if not accept, our own mortality so that we can live our lives to the fullest.
• Hospice professionals should also be trained to speak not only with patients, but with doctors and caregivers as well. While patients must agree to hospice care, their decisions are often influenced by those caring for them.

Are there any other reasons you think terminally ill individuals may hold off on hospice care? What are some of the other ways we can ensure such individuals call in hospice earlier, when appropriate?