Because of the unpredictability of PF, the Pulmonary Fibrosis Foundation advises patients to “prepare for the worst but hope for the best,” doing everything possible to maximize quality of life.
Part of that is planning for the future. As part of the Pulmonary Fibrosis Foundation’s Disease Education Webinar Series, Kathleen Lindell, PhD, RN, ATSF, FAAN presents “Sorting through Advance Directives: What Do I Need to Have in Order?” Summarized below, the 50-minute webinar reviews documentation and conversations that should occur before becoming incapacitated so decision-makers can know their loved one’s desires for future care.
Dr. Lindell is an Associate Professor of Medicine in the Division of Pulmonary, Allergy and Critical Care Medicine at the University of Pittsburgh School of Medicine, part of the Simmons Center for Interstitial Lung Disease (a PFF Care Center). The webinar is co-presented by pulmonologist David J. Lederer, MD, MS, Senior Medical Advisor on Education and Awareness for the PFF.
- Advance care planning is determining what is most important to you, the patient, in the event of serious illness or loss of decision-making ability. It involves conversations that “allow you to think about what you would want when you get sicker; state your values, goals and preferences for future medical care; and prepare for medical decision-making.” It is typically centered on completing advance directive forms in which a healthcare proxy and personal desires are listed.
- Important considerations when planning future care involve knowing what you want. Is there someone to make decisions for you if you can no longer do so for yourself, and is the person aware of this? Further, is the person aware of your values and wants? Do you wish to be placed in an intensive care unit (ICU) on a breathing apparatus, or be in a hospice setting or at home at the end of life? Also, do you have any special desires such as organ donation or offering your body for research? (Organ donation is always encouraged and the process varies by state.) Find simple tools to help guide these decisions at the National Healthcare Decisions Day website.
- Selecting a healthcare proxy, or someone to make healthcare decisions on your behalf, involves the following: choosing someone you trust with your life who will follow directions regardless of feelings; who lives nearby or able to travel when needed, and is available long-term; someone who can mediate conflicting opinions; and a person who can stand firm on your behalf against an indifferent institution or doctor. Note that selection criteria can vary by state, as can title of the person acting on your behalf—proxy, healthcare agent, representative, etc.
- There is an order of healthcare proxies when a patient can longer make decisions, which varies by state and must be followed during selection. (A social worker should be familiar with such rules.) In Pennsylvania, for example, there are six ranking classes: (1) spouse and original adult children, (2) all remaining adult children, (3) parents, (4) adult brothers and sisters, (5) adult grandchildren, and (6) other adults aware of the patient’s wants and values. (An attorney should be consulted for those who wish to potentially override this order.)
- Important advance care planning forms include the following:
- While technically not an advance directive, the disability parking placard is important for a serious illness like PF. The form is obtained through one’s physician or Department of Motor Vehicles; once a doctor has signed off, the DMV then begins the fulfillment process.
- Five Wishes® is the first living will to address all areas at the end of life: medical and legal, as well as personal, emotional and spiritual. It is often available by healthcare providers.
- The state advance healthcare directive, available through one’s state department of public health, should be completed with a witness and involves documenting a proxy and personal wishes for end-of-life medical care.
- Physician’s Orders for Life-Sustaining Treatment (POLST) is a colored form of patient wishes to be carried out by treatment and emergency personnel (whether to receive CPR or other intensive care, for example), completed after one’s medical situation has been explained by a doctor. With a copy in one’s records, the form accompanies the patient when changing medical settings. To be valid, POLST forms must be signed by a doctor, physician assistant, or nurse depending on state requirements. (Ask your doctor’s office for more information.)
How advance directives differ from and work together with POLST is as follows:
- POLST is a medical order completed by a practitioner based on a conversation between patient and provider; conversely, an advance directive (Five Wishes, state directive) is a legal document of general treatment wishes that a patient and proxy are responsible for keeping and updating.
- POLST is for those a physician believes could be deceased in a year whereas an advance directive should be completed by all competent adults.
- Because of its unpredictability in acute exacerbation, people with PF should have both advance directives and POLST in place at all times.
- No proxy is allowed under POLST, though a proxy can discuss and modify the form if a patient is incapacitated.
- The practitioner is accountable for periodically reviewing POLST with the patient or proxy and making any updates.
- Additional resources include Prepare for Your Care, a step-by-step resource for completing an advance directive; the Conversation Project for helping people discuss their wishes for end-of-life care (the origin of National Healthcare Decisions Day); and the advance care planning site Getting Your Affairs in Order by the National Institute on Aging (NIA).
- To avoid unnecessary caregiver stress in an emergency, the NIA advises that patients keep all important papers in one place and that the caregiver knows the location; that patients discuss end-of-life desires with their doctor; and that they give advance permission for their doctor or attorney to speak with their caregiver as needed.
The webinar can be found at: