Dear Carol: My dad has aggressive prostate cancer that has spread to his liver and bones. His oncologist isn't very communicative and when I asked about hospice care he said that's up to us. He told us that Dad won't get better but that he can keep treating him if we want. The treatments make Dad miserable. If they won't help, what's the point? I feel strongly that Dad needs hospice care and have been trying to talk my mom into it but she's dragging her feet. How do we go about getting the service? Which one do we choose? Will Mom have to go on Medicaid to get it paid for? This is her biggest fear. - ST
Dear ST: You are in a heartbreaking situation and have my deepest sympathy. My family had to make the hospice choice for our dad, and Mom dragged her feet, as well. Denial is human and a strong force that's not easy to overcome, and going on hospice care means overcoming denial by admitting to ourselves that our loved one is dying.
Some doctors still present hospice in a negative way by saying, "We can't do anything more so you might as well go with hospice." While understandable coming from people trained to cure, this doesn't help the family cope. Thankfully, increasing numbers of doctors are now accepting that there is a point where they can't cure a patient who is suffering and terminally ill, and that hospice is an active choice for this person's dignity and quality of life.
So, what can you do to help?
First, of course, make certain that hospice is your dad's choice. Next, reassure your mom that hospice is covered by Medicare and most other insurances. Check Medicare.gov for details.
Then you can move forward. If you are fortunate enough to have choices, choose the organization carefully. Early on, nearly all hospices were non-profit, but because of the growing need for hospice care, many other companies have jumped on board, some better than others. If you have choices in your community, ask them all for references before making a decision.
Any hospice organization will need a determination from a doctor saying that your dad will likely live less than six months no matter what type of care he has. It sounds as if your dad would easily qualify.
Once you've started talking with the hospice organization, they will take you through the steps. They offer comfort care for the patient as well as family support and the option of support from an interdenominational chaplain.
You sound ready to sign on, so begin making phone calls. Once care is in place, your whole family will likely feel some relief since a good hospice organization will help you all navigate the rest of your dad's journey. Since I've been in your shoes I understand how hard this must be for you, so again I want to express my deepest sympathy. Your parents need you to be strong.
Carol Bradley Bursack is an established columnist, blogger, and the author of a support book on caregiving. She hosts a website supporting caregivers and elders at www.mindingourelders.com. Carol can be reached at email@example.com.