Refusing Hospice Care: Examining a Patient’s Rights and Responsibilities

Typically, people are eligible for hospice care in San Mateo and elsewhere if their doctor confirms they have six months or less to live. Sometimes, despite the wishes of physicians and close family members, patients refuse hospice. They may do this for any number of reasons, all of which are deeply personal and very real. People have the right to refuse hospice care and treatment; they also have the right to dictated the terms of their hospice care if they do choose to enter into it. The tricky part comes in when the mental competency of the patient is called into question. Do they have full awareness of what they’re choosing (or in this case, not choosing?).

In general, if patients have their full faculties, they have the right to make all of their own healthcare decisions, including the decision of whether or not to accept hospice care. If they are not of sound mind, a power of attorney health care proxy can step in. Even then, there are blurry areas as family members struggle with the decision to comply with their loved one’s wishes, especially when they believe hospice will make them more comfortable for the little time they have left.

According to VeryWellHealth, there are four main goals for any type of medical treatment: preventive, curative, management, and palliative. When asked to choose among many treatment options, you are essentially choosing what you consider to be the best outcome from those choices. Whether anyone has the right to refuse care will depend on the patient’s circumstances and the reasons given for refusing care. The right to refuse treatment is deeply connected with another patient right, which is the right to informed consent.

People should only consent to medical treatment if they have sufficient information about their diagnosis and all treatment options available. Prior to beginning any course of treatment, physicians must make the patient aware of what they plan to do. For any course of treatment, including hospice care where the goal is comfort, not cure, doctors must disclose as much information as possible so the patient can make an informed decision about their care.

When patients have been sufficiently informed about the treatment options, they have the right to accept or refuse treatment. In a nutshell, it is unethical to force or coerce patients into treatment against their will if they are of sound mind and have the mental capacity to make an informed decision.

What to do When a Loved One Refuses Hospice Care

It can be stressful, frustrating and sad when your loved one has decided to refuse hospice care. It’s important to keep in mind that this is their life and their decision; there may be nothing left to do but support their decision. Here are some tips:

• Listen without judgment: Calmly listen to what your loved one has to say, without arguing or persuading them to change their mind.
• Ask why they are uncomfortable with hospice: Ask why but don’t argue with their reasoning. When you carefully listen, you will be better able to understand their views on end-of-life care. Perhaps they have misconceptions about hospice or maybe they have experienced a traumatic incident with death in the past. Give them a safe space where they can express their feelings, even if you are not in agreement.
• Validate their emotions: The American Cancer Society suggests saying something like “I hadn’t thought about it that way, thank you for sharing your point of view with me,” or, “I would feel better if you spoke to a doctor about treatment options, but I support your choice and vow to help you through this time in the best way I can.”
• Gently give reassuring facts: Once you see where their resistance is originating from, you can gradually give additional factual information about hospice. Without arguing, simply mention some interesting details and facts about hospice. You may want to mention a recent study that showed survival was 29 days longer for hospice patients than for non-hospice patients.
• Respect their wishes: Make sure your loved one knows they have control over their own decisions and that you will honor their choice. Support and positive vibes are what they need right now.

In the end, no one should be pressured into receiving hospice care if it doesn’t meet their expectations and preferences. That being said, most patients who initially refuse hospice care will end up agreeing to it and making peace with that choice. Patients should be allowed the freedom to choose their own course of treatment, timing, and method. When you show respect for their right to make a critical decision for themselves like this, you are taking an important step in helping them embrace their own end-of-life process.

Contact Pathways Home Health and Hospice

We invite you to learn more about our hospice program here at Pathways, where we would be happy to sit down and answer any questions the patient and family members may have. Contact us today at 888-978-1306.