Choices at the End of Life: Finding Out What Your Parents Want Before It's Too Late Linda Norlander, RN, MS, and Kerstin McSteen, RN, MS Fairview Press 2450 Riverside Ave Minneapolis, MN 55454 Tele: 800-544-8207 Web site: http://www.fairviewpress.org. ISBN 0-19-514360-4 $14.95
Choices at the End of Life is a helpful book intended to guide people caring for parents and loved ones through the difficult and often confusing task of preparing for end-of-life care. This book discusses the problems we all face as our parents age, and how best to protect them from a culture that does not accept death until it is immediately before us. The book guides the reader through the many steps needed to shield our parents and others from the consequences associated with lack of knowledge about death in today's healthcare system. It carefully describes how to plan for what you and your parents would want when facing the end of life. Packed full of poignant stories and case studies about people who made the right decisions but often with struggles, the book is a practical and easy-to-understand guide for the general public; it is also useful for those of us in the healthcare professions in helping families make the best choices about the end-of-life care.
The reader is introduced to several of the changes healthcare has undergone over the last 50 years. The authors discuss the evolution of various medical treatment options and their impact on today's patient and family. For example, the authors describe how advances in technology and the treatment choices have made end-of-life care decisions more complicated and difficult. The issue of prolongation of life at various stages of health and illness is discussed as well as ethical and legal matters. Throughout the book, references are made to resource material provided book's conclusion to further guide the reader.
Organized into 10 chapters, the book covers the common issues faced by people dealing with the traditional medical model and those involved in hospice and palliative care programs. Topics include: Who's who in advance care planning, healthcare options, opening the discussion, understanding the values and goals, assessing decision-making ability, how to talk to your doctor, completing a healthcare directive, understanding hospice care, and "kitchen table calamities."
In the first chapter, the authors describe the "kitchen table discussion" as a way to reach parents to begin the business of end-of-life care decision making. Chapters 1 and 2 offer suggestions on how to broach the topic of end-of-life care with one's parents. The phrase "the elephant in the room," coined in the past and referring to society's ignoring of alcohol abuse in family members, is linked to today's "elephant in the room" referring to impending death. Data are provided on what many people want for care at the end of their lives. The authors also give examples of what to look for in aging parents and they identify several "red flag" changes that may be indicative of problems that parents may soon face. Warnings such as a recent health crisis or a general decline, for example, might be good indicators that it is time to prepare.
Also addressed are topics such as who to invite to the "kitchen table discussion." Family members, friends, neighbors, clergy, and extended family can all act as key players to spark the discussion. The physician's role in this meeting is mentioned, as is the need to educate the public that lawyers are not needed to complete the healthcare proxy form.
Chapters 3 and 4 discuss choices in healthcare, such as hospice and palliative care versus the traditional medical model. Medical terms are defined and information provided on CPR, mechanical ventilation, use of feeding tubes and intravenous therapy, dialysis, antibiotic therapy, surgery, and blood transfusions. The authors also define comfort care, and note that if your parents want aggressive comfort care measures, then you must make sure this is on the healthcare proxy form.
The authors suggest how to "hint" to your parents that this important talk is forthcoming. Allowing parents to pick the time and place may help the meeting to commence well. Also, it may be helpful to begin the discussion by talking to parents about losses of family and friends from the past, and allow them to talk about other topics such as planning the funeral and preparing the financial will. Finally, the authors instruct that you must be prepared to allow the decisions and choices to be made by the parents-reminding that it should be their agenda, not yours.
Chapters 5 and 6 present ways to talk to parents about their values and goals in end-of-life care. The authors suggest to not impose your values; it should be the parents' values and goals being decided upon. The authors refer readers to books that may serve as a guides to help better understand parents' values and goals.
Chapters 5 and 6 also raise the topic of the decision-making capacity of parents. We have all seen our parents forget where they put the coffee pot or ask why the bills weren't paid, so how can they possibly make important decisions about end-of-life care and goals?
According to the authors, physical and mental status changes can affect our parents' decision-making capacity; therefore, it's important to express patience. Studies have shown that many elderly people in nursing homes are capable of naming a healthcare agent and answering "yes" and "no" to questions about what they want for their healthcare in the final years and months of life.
Chapters 7 and 8 offer readers practical advice about how to speak to a doctor about your wishes and also explain how to complete a healthcare directive. Unfortunately, there is misinformation noted in chapter 8. It refers to Appendix A, "State Laws on Healthcare Directives," lists New York state as recognizing the healthcare directive but not the healthcare agent. In fact, New York state does recognize the healthcare proxy, but in the absence of a healthcare proxy, New York State does not recognize surrogate law, although many states do. Surrogate law in New York state requires clear and convincing evidence before healthcare decisions, such as removal or withdrawal of treatment (ie, ventilators), can be instituted. In other states where surrogate law is recognized, the surrogate may act in the patient's best interest, or as the substituted judgment, meaning the surrogate knows the wishes of the patient even though it is not in writing. State laws on healthcare directives differ by state; therefore, this information should be clarified.
The final chapters discuss hospice care and "kitchen table calamities," including an explanation of hospice care, when it should be started, how to broach the subject, and other details including cost. Problems such as parents who refuse to talk about hospice care, or what can be done if a loved one is unconscious and unable to make his or her wishes known, are also discussed. The authors suggest meeting with family members and having the kitchen table discussion to review parents' goals and values during these times of crisis. Other questions such as, "What do you do if the healthcare facility won't follow your parents' healthcare directives or the agent isn't following your mother's wishes?" are addressed. The authors provide tips on how to handle these kitchen table calamities-from calling the family together again to contacting a lawyer. The authors remind readers that a healthcare proxy is a legal document.
Choices at the End of Life effectively uses stories and numerous examples of situations involving families that have had to make difficult decisions. I found this book very helpful with its practical and straightforward advice, from the introduction of the issues, to establishing goals, to completing the healthcare proxy form. It is a good choice and reasonably priced at $14.95. The book is intended for individuals involved in caring for parents or other loved ones as well as healthcare professionals. The authors deal with complicated and emotionally charged topics not easily talked about in our society. The "elephant in the living room" issue is not new; our society often tries to keep difficult issues in the closet.
Unfortunately, we often make the assumption that healthcare matters will be taken care of by physicians, and that clinicians will know how handle any problems that may develop. Delivering healthcare has changed dramatically over the past 5 decades. General practitioners who cared for our aging parents generally knew what our parents wanted. To find this type of doctor-patient relationship today would be rare indeed. Therefore, we must all prepare and protect aging adults in today's ever-changing healthcare environment.