How can I best communicate with my hospice care team as a cancer patient?

Patients, their loved ones, and other caregivers are a vital part of the hospice team. The hospice staff should be there every step of the way to help as needed. It is part of their hospice services to be available anytime to answer questions or to help with unexpected needs.

The hospice staff should respectfully listen to you and respond quickly at any hour of the day or night. This includes making home visits at any time, if needed, to address symptoms or issues that develop. Keep the 24-hour emergency number for hospice in a visible place for all caregivers and loved ones.

Some tips for working well together include:
  • Keep a notebook with all caregiving information in one place; have this notebook with you when you talk to the staff.
  • When you are describing a new symptom, give as many details as possible such as when it started, how long it lasted, and whether there are any needs. These details help your hospice team find the best solutions.
  • Always feel free to ask questions and seek help from the hospice staff.
  • If you have questions about something, keep asking until you completely understand.
Barbara Coombs Lee
Hospice Nursing
Honestly and often. Hospice does its best work when the team knows the nature of your symptoms, whether they are stable or increasing, and what is most important to you --- you specifically --- as the end of life approaches. If remaining conscious is most important, tell them and they can adjust pain medication or be more creative with non-sedating alternatives. If reducing the time spent with medical tests and interventions and increasing the time spent with family and loved ones, tell them that. People often tell hospice about their pain, but other symptoms can be bothersome as well. If nausea, fatigue, itching, constipation or other symptom is bringing misery, make sure the hospice nurse knows this. If food has been a prominent feature of your life’s enjoyment or if your appetite is poor, the hospice staff may be able to help. Don’t be afraid to ask about non-traditional remedies. For example, marijuana is legal in many jurisdictions but it will not be available unless you ask. It has been shown effective to treat nausea, pain and decreased appetite.
These are just a few examples of things that may be on your mind as you receive hospice care. The hospice goal is to improve the quality of life and prevent unnecessary suffering. They need your help to meet this goal. They need to know what you are experiencing and what you need. Frank conversation is the best way to meet that goal together. 

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Important: This content reflects information from various individuals and organizations and may offer alternative or opposing points of view. It should not be used for medical advice, diagnosis or treatment. As always, you should consult with your healthcare provider about your specific health needs.