Hospice is not a place. It is a different kind of care. It is comfort care for people who are expected to die within six months or less. This prognosis is determined by a physician. Hospice has many benefits for people who need end-of-life care. A specialized team of social workers, nurses, doctors, spiritual care providers, and holistic therapists work together to help the patient and family determine the best plan of care. Most people would like to die at home and hospice professionals work hard to honor their requests. Unfortunately, many people who qualify and would benefit from hospice services do not take advantage of them until the last week, day, or even hour of their life.
Here are some reasons why people are afraid of hospice:
Lack of communication with their doctor: Some physicians still have a hard time talking to patients about the end of life. Alexander Smith, a palliative care physician at the University of California, San Francisco states in Scientific American , “Many clinicians are afraid to talk about prognosis-how long a patient may have to live. Talking about death in America is forbidden, a taboo topic.” (Fessenden, 2012). Therefore, when the doctor writes a referral to hospice, some patients and family members are shocked. As a hospice nurse, I sometimes get told by patients and families that I am the first person who has brought up the topic of hospice with them. It is my job as a hospice professional to answer all of their questions and alleviate any concerns they have.
Fear of being given too much pain medication: Patients and families sometimes worry that while under hospice care, the patient will be given too much pain medication and will become sedated. Patients and their families want to be able to communicate with each other for as long as possible. As hospice professionals, we educate patients and families on the use of pain and other comfort medications. When a patient is having pain, we ask them if they would like some pain medication. If they say yes, we ask them to state their level of pain on a scale of 1-10 (10 being the worst) and treat accordingly. We titrate the medication based on the patient’s needs and desires. When a patient has less pain, they are able to enjoy the time they have left with their loved ones.
Concerns about their loved ones not getting enough nutrition: When a patient is alert and requests food and drink, they can have whatever they want. We encourage patients to eat their favorite foods and enjoy life. When a patient is imminently dying, they lose their ability to swallow. They also lose their appetite and their body is not able to absorb nutrients or tolerate fluids. This is a natural part of the dying process. It is hard for some families to understand this. Some wonder why we discourage feeding tubes at this stage. Letting the families know that a feeding tube would cause their loved one more discomfort, (increased swelling, increased congestion, shortness of breath), is crucial to alleviating fears regarding the issue of nutrition.
Hospice is about having quality of life for however long or short that is. Many people don’t take advantage of all the benefits hospice has to offer. Increased education and communication between patients and healthcare professionals is necessary to lessen the anxiety on death and dying.
Fessenden, Mary. (2012, July). Better Preparation Could Improve the Quality of Death-and Life-for Terminal Patients. Scientific American. Retrieved on July 17, 2012 from http://www.scientificamerican.com/article.cfm?id=better-preparation-quality-life-death