I am in the end stages of my disease progression, I know it, and I’m not really afraid anymore. I’ve recently had some great conversations with my doctor about the benefits of hospice care. But my family equates hospice with death and almost makes me feel guilty about going this route. Frankly, I feel as though they are in denial about where I am. They don’t want me to give up.
What can I do to help them understand that hospice is more than that?
Ready for Hospice
Dear Ready for Hospice,
Thank you for reaching out. Being in the end stages of your disease progression can be a challenging time for you and your family, but having those important conversations with your doctor is exactly what you should be doing.
Though your family might not understand that what you’re doing is best for your goals as a patient, we here at Crossroads Hospice & Palliative Care are here to help and support your end-of-life decisions.
First, it’s not surprising that your family is reacting the way that they are. Hospice care has evolved a lot in recent years, but whenever the word ‘hospice’ is mentioned, many families in denial about a loved one dying still immediately think, “My loved one is going to die next week?!?”
Some believe that hospice means patients will stop taking all their medications or that all of a sudden, a switch will be turned off and life will be over. In reality, these beliefs and fears couldn’t be further from what hospice actually is – for both the patient and their loved ones.
Now, hospice is not about giving up or dying tomorrow. Hospice care is about evaluating what’s important to you and determining how to live the best quality of life for you. Hospice care is not about the quantity of days you have left, but rather the quality of those days and how you choose to spend them.
It’s important you have a doctor who understands your medical needs and where your end-of-life journey is heading. It sounds like you have a good relationship with your current doctor, so it might be helpful to set up a family meeting with them to discuss any questions and review your current progression.
When you begin hospice care with Crossroads, we start with a patient evaluation or an informational visit where we meet with you and your family. These conversations are a time to express what’s going on medically and discover what you’re thinking about in relation to your health and end-of-life goals.
Supporting your family is also an integral part of your hospice care. We know that everyone will come to us at a different place of understanding, so we strive to help your family establish what hospice care is and to set common goals with them as well. These are important steps for getting everyone on the same page.
For some families in denial about a loved one dying, it can be tough to begin these conversations because they might be hearing things for the first time. Or they might be hearing things they don’t want to hear. Still, these are important and scary conversations to have, and all of our Crossroads team members are trained for these moments. Our nurses, health aides, chaplains, and social workers all understand how to answer questions, offer support, and guide folks through uncertain times. Don’t be afraid to ask them for help.
Another thing for your family to keep in mind is that hospice care can be provided in your home — or wherever you call home. That means, you don’t have to stay in the hospital or long-term facility to receive hospice. We will come to you, wherever you choose that to be. So if that means from your living room, we will show up and begin providing to you the best symptom management and comfort care you have asked for.
With Crossroads, it’s all about listening to our patient’s needs and helping them achieve those goals. You and your family’s journey is important to us, so let us help you all get there together.
Social Work Team Coordinator
Crossroads Hospice & Palliative Care
For more information on hospice eligibility requirements, give us a call at 888-564-3405.
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