Communicating with the Patient
My husband is dying and refuses palliative care. What can I do?

Most palliative care programs require people to accept that the programs offer comfort-focused care rather than efforts to cure the underlying illness. This is hard for many people to accept. Even if deep down they are aware of their situation, it’s hard to let go of hope for a cure.

This can be frustrating and upsetting for others, but people with life-threatening illnesses need the time and space to find their own approach. They also need support in whatever form they will accept. As the burden of illness becomes heavier, the reality of the situation becomes harder to deny. This usually brings a gradual shift toward accepting support.

It may help to ask your husband why he’s refusing palliative care. His refusal may be based on misconceptions. Many people, even some health care providers, believe palliative care equals no care. Unfortunately this often is how palliative care is raised. Your husband may believe that nothing will be done for him. This is not true. Palliative care is very active care, with a clear focus on comfort and quality of life.

Even if your husband never lets go of the hope for a cure, or may never even acknowledge his illness, palliative care can offer the best possible quality of life. In such circumstances, people working in palliative care are presented as health care providers who can help control his symptoms, such as pain or nausea. They’re usually brought in as consultants and don’t highlight the terminal phase of the illness.

Your husband’s health care providers need to spend time discussing your husband’s concerns, what he can expect and realistic options for treatment and management of symptoms. It’s hard to tell someone that there are no options left that could change the progression of an illness. Yet, this is far from saying "there’s nothing more we can do." Palliative care offers much that can and will be done, although with different goals. Your husband may need reassurance that no one is giving up on him.