This blog features posts from multiple departments of the National Brain Tumor Society. From keeping you updated on the research advancements, to providing insight into our public policy advocacy efforts, we want to keep you informed of how NBTS as an organization is here for you. Questions or comments? Email questions@braintumor.org.
When families use hospice, the overwhelming majority find the experience comforting and find the services helpful, yet many do not get referred until far into their loved one’s disease. Statistics show that while hospice is intended for anyone in the last 6 months of life, most patients are on hospice less than 2 weeks. Our healthcare system is set up to treat us and make us well, with a focus on “curing” our illness. It seems there is a fairly abrupt shift when looking toward comfort care and symptom management. Families and patients both express worry over even saying the word, lest they look pessimistic or disloyal. Physicians may feel the same way or may be focused on new treatments coming down the line.
This is a tough topic for patients and families but an important one. So how do you know if you or your loved one should be thinking about hospice?
There are patterns that people with brain cancer have near the end of life. It is hard to watch for, and caregivers have that ominous feeling that something is happening. Talking with the doctor or nurse helps to confirm the actions witnessed.
One of the earliest signs is when someone stops eating and drinking. The appetite seems to disappear. It is often subtle, and not really apparent until the person is weighed and the scale shows a decrease.
A person may have clinical symptoms such as an abrupt change in personality. Headaches may begin to develop because of the pressure in the head. Medication for headache pain is strongly encouraged to keep someone comfortable.
A person may become quite fatigued and want to stay in bed. Sleeping for more hours than being awake may happen.
Changes in breathing patterns are one of the final signs in the end of life. A long pause between breathes can occur. The periods of apnea is alarming at first, then easier to watch.
Hospice is an excellent resource for the end of life because the nurses and doctors are familiar with these symptoms. Having someone there to talk with about these changes and progression really helps.
What experiences have you had with hospice?
Blog reposted from November 2010
