Q: My mom has stage IV breast cancer and is no longer responding to treatments. How and when do I start to talk to her about what is happening to her, and the option of entering hospice? I’m not sure what to expect.
A: If your mom is no longer responding to treatments, it’s time to talk. When starting a difficult conversation, it helps to use open-ended questions and listen for cues from your mom. For example, start by asking questions like:
- What has the doctor told you about your treatment (or about your cancer)?
- What are your greatest concerns or difficulties right now?
These types of questions can give you a sense of your loved one’s understanding of their disease and increases your understanding of how it is impacting their life from their perspective. As a hospice nurse, I often start a conversation about hospice using one of these questions to understand what an individual or family are going through. As a loved one who is closer to the situation and more emotionally involved, one may think they know the answers to these questions; however, we only know them from our own perspective. Keep in mind, your family’s communication style is likely not going to change during a serious illness. If your family does not tend to openly communicate, your mother may be reluctant to have this conversation with you, perhaps out of a desire to protect you. Still, it is worth attempting to have the conversation.
Another great question to ask is:
- If your time is limited, how would you like to spend your time?
As a hospice nurse I have heard patients and families say, “I wish we would have known how short our time together was, we would have spent it differently.” Keep in mind, there is no right answer here. Some individuals would choose to continue to pursue every possible treatment, even if it means most of their time is spent in clinics and hospitals. Others may welcome the opportunity to explore other options, such as spending time with family and friends.
Once you have started the conversation with these open-ended questions, you can talk about which services might be the best fit to meet your mom’s needs and desires. The topic of hospice might go something like, “Mom, you’re telling me you really want to spend your time at home enjoying your family and friends. You also said you need some support with managing your pain and other issues. Would you be willing to talk with someone from hospice to see what they could do to help us?”
If you prefer that the hospice have the conversation, you can simply ask your mom if she is receptive to hearing about hospice care as an option. It is a good idea to “shop” for a hospice. There is information on “how to choose a quality hospice” on the NHPCO CaringInfo.org website. It’s appropriate to ask for a hospice consult to learn more. You are under no obligation to enroll in hospice care during a hospice consult visit.
If your mom says, “Oh, I’m not dying yet!” you can reassure her that hospice is not just for imminent death. There is a lot hospice can do to support your mom and the whole family. Hospice is a Medicare benefit that everyone is entitled to. Besides providing a specially trained team, hospice covers the cost of medications and equipment related to your mom’s metastatic breast cancer. Studies have shown that seriously ill individuals lived longer with a higher quality of life when they had hospice care versus usual care.
If your mom refuses to consider hospice care, palliative care is another option. Palliative care does not provide the same amount of services as hospice, and access is limited. However, palliative care teams provide symptom management and engage seriously ill individuals and their families in ongoing discussions about care options aligned with personal goals. Your mom’s oncologist can help you find palliative care services. There is also a map of hospice and palliative care providers on the NHPCO CaringInfo.org website. You can toggle between hospice and palliative care under “Search by Provider Type.”
You may wonder why the doctor hasn’t talked with your mom about hospice care. Sometimes doctors take their cues from the patient and family. You or your mom can ask the doctor about whether hospice care is a good option now. If your mom is receptive to visiting with someone from hospice to learn more and decides to enroll in the hospice benefit, her primary doctor will be included in completing the enrollment process. Individuals can continue to receive care from their primary doctor, and the hospice will communicate and collaborate with your mom’s doctor.
It is a good idea for family members to be present at the initial hospice visit. The hospice team member will try to understand your mom and family’s understanding of the situation and what your immediate needs are. The hospice representative will explain the hospice benefit. It is important for your mom and your family to ask questions and speak up about your needs and expectations. Hospice care is individualized, and the hospice team will make every effort to meet your unique needs.
Starting these conversations can be difficult, but it can be a gift to your mom and your family. Sometimes everyone is waiting for someone else to begin the conversation. The oncologist and a hospice team can help start or continue the discussion. Once you begin the conversation, more options for care and support are available to your mom and your entire family.
Lori Bishop, MHA, BSN, RN, CHPN, is a healthcare nurse executive focused on innovative and transformational interdisciplinary care delivery models for the vulnerable seriously ill population. Lori has an extensive clinical background in hospice and palliative care. Her current position is vice president of palliative and advanced care at the National Hospice and Palliative Care Organization.