 | Sandi Petersen, a resident of Dallas, earned her Bachelor’s degree in business and biology from East Texas Baptist University and also received a Bachelor of Science degree in nursing from Northwestern State University in Natchitoches, La. She has a masters of science in nursing from the University of Texas, a post-masters Geriatric Nurse Practitioner certificate from the University of Texas Medical Branch at Galveston, Tx, and a Doctorate in Nursing Practice from Rush University School of Nursing in Chicago, IL. She has authored numerous articles relating to assisted living and healthcare that have appeared in key related trade journals and throughout various educational documents. She professionally lectures throughout the country at seminars and before professional organizations. Petersen is a member of the ALFA Nurse Action Committee. |
Hospice
2008-02-01 14:05:00
How to discuss ‘end of life’ issues
Is it best to wait until a doctor recommends hospice for a patient, or is it proper for a family member or loved one to bring it up to the doctor? And at what point should one discuss and/or decide end of life issues?
Answer: Appropriate goals for your medical care during a life-limiting illness require an ongoing partnership with your physician or other healthcare provider. Don’t be afraid to tell your provider what’s important to you, how you would like to be treated, what you don’t understand, and what you are concerned about. If you feel hospice may be of benefit to you in meeting your healthcare goals, don’t be afraid to ask. Hospice services can include nursing care, counseling, social work services, family support, and support by spiritual counselors. After care services are available for families or significant others. These usually consist of group or individual grief counseling. It does take an order from a physician to get someone enrolled in a hospice; however, patients who feel they may need these services should be proactive in communicating this need to their healthcare provider. Some programs may offer pre-hospice counseling to people who have been diagnosed with a terminal illness; others may offer palliative care to those who may not be ready for hospice. The patient seeking more information with which to approach their physician may want to contact the hospice directly to get this information as a first step.
Tell your provider everything you know about your illness, including what you may have learned from other physicians, from your pre-hospice consult, and from your own research. Decide how much information you want. Do you want all the details, or just the big picture? When talking to your provider and planning treatment, do you want the help of a family member or close friend? If you’ve appointed a healthcare proxy, do you want that person to also help in gathering information? Your healthcare provider needs to know what’s important to you to help in making decisions about your care. Ask for an explanation of anything you don’t understand. It may be helpful to create a written list of questions to take with you to your visit. You may not be able to get a precise “prediction,” but you do need a general sense of what to expect. The following questions can help you get started:
• “What is the longest amount of time that I could reasonably hope for, and what is the shortest that my family should be prepared for?”
• “What does this illness tend to do? What kinds of complications arise? Can my pain and other symptoms be controlled?”
• “What treatments help? How much do they help? What will it be like for me to undergo treatments, should I decide to do that?”
• “What will my last few weeks or months be like?”
• “Do you think hospice care is a good option for me?”
These are difficult questions to ask and to answer. You may find it useful to tell your provider what you expect might happen, and then ask for corrections and further explanation
Your provider also needs to understand what’s most important to you. What makes life worth living? What do you want to accomplish? What conditions do you consider worse than death? What are you afraid of, or concerned about? Do you prefer care in your home rather than hospital care? Or, would a hospice residence more closely fit your needs? If you think that you could benefit from hospice, ask your physician (or other healthcare provider) about being enrolled in a hospice program. Make sure to review specific treatments that you want or don’t want, such as using a ventilator or a feeding tube. Ask your provider to assist you with Advanced Directives information and to help you understand the legal guidance that’s needed to ensure your wishes are honored. While quantity of life may be limited, it’s up to you to ensure that your quality of life is at a maximum Remember that hospice is not about dying, it’s about living with hope---enjoying the best of life every day!
