In our last column, we discussed the history and implementation of the Patient Self-Determination Act and the importance of advance directives such as Living Wills. However, for people faced with chronic illness or a progressive disease diagnosis, priorities and the definition of quality of life may change over time.
How can you make the best choices for yourself when you are ill? Caring conversations involve asking more in-depth questions of yourself, your loved ones and your health care providers. Faced with a life-limiting illness, it's important to get the best possible information about treatment options and care. Work with your provider to understand the effects and limitations of treatment — or no treatment at all. Realize that a choice for treatment at one point does not eliminate the possibility of a different approach during later stages of a disease.
In any progressive chronic illness, the most important focus is how you see yourself LIVING with the disease rather than dying from it. How do you want to spend the time you have? For some, it may mean choosing treatment options while others may prefer to manage symptoms and pain without significant medical intervention.
As circumstances change during the course of illness, ongoing conversations with family and providers become even more important in building a team relationship. The inter-disciplinary and patient-centered approach of home care agencies can be especially supportive in this process. Patients and families are at the center of goal-setting and shared decision-making. Home care staff can help when family dynamics or communication problems create conflict or uncertainty.
Facing a change in prognosis or news of a serious illness brings challenges and tough decisions. It can also bring opportunities. The National Hospice and Palliative Care Organization suggests you look at the ways that you have successfully coped with difficulty in the past. Think about what you want and what you don't want for end-of-life care. Learn about treatment and care options. Examine your priorities and values, and share them with those you love.
The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm Program is a major quality initiative under way across the country, including in New Hampshire where it is in early stages of development. The program is dedicated to improving patient care and reducing medical errors through a system that identifies and respects patients' wishes for medical treatment throughout all health care settings.
Learning that your illness is serious and may limit your life is never easy. Family conversations about end-of-life care stop and start over time. Conditions change, new information makes a difference, and relationships shift. What matters most is to talk with the people you love, your physician, and all the members of your health care team. By learning what to expect and knowing your options, you can be sure that your wishes are honored and respected.
Additional resources on this subject are available through "Caring Connections," a program of the National Hospice and Palliative Care Organization. NHPCO is a national consumer and community engagement initiative to improve care at the end of life and can be found online at www.nhpco.org. A free public forum on eldercare options in the community takes place at the Visiting Nurse offices, 46 Seavey Street, North Conway, on the first Thursday of each month from 5 to 6 p.m.. Call 1 (800) 499-4171 or 356-7006 with questions or for more information; read all of our "Home Care Matters" columns at www.vnhch.org.
("Home Care Matters" is a bi-weekly column sharing information on today's important home care issues. The articles are written by Sandra Ruka RN MSN and Sharon Malenfant MS for Visiting Nurse, Home Care & Hospice of Carroll County.)