Dianne Scheinberg, MS, RD, LDN
Medicine today has the power to prolong life in two different ways. Many of us will live longer and fuller life spans because of medical advances, lifesaving interventions, and new prevention knowledge. Others of us will find our last days and months prolonged—sometimes in an unwelcome way—by life support technology and practices that enhance neither the quality of our lives nor our deaths.
Life support can breathe for us, feed us, and substitute for vital organs. Sometimes a partial (or full) recovery from a terminal illness or incapacitated state is possible; but even when there is no hope of revival, doctors may sometimes take extraordinary measures. But increasingly, doctors, along with patients and family members, recognize when curative technology is no longer indicated and a different technology—end of life care—should be brought into play.
Talk of dignity, quality, and sanctity of life has been heard ever more frequently in hospitals, medical schools, and the media. These terms have different meanings for each of us, and can sometimes be used as arguments for or against life support. At the same time, dignity and quality of life are important to all of us, especially when we are very ill and potentially near the end of our lives. So who should decide what care is life-saving as opposed to death-prolonging? You.
There are a great many considerations to end-of-life care, including: emotional and philosophical concerns, deciding where to receive care, and legal options. The one thing that everyone agrees on is that each of us should ponder, discuss, and legally establish our approach to the management of life-threatening illness
a medical crisis occurs.
You can begin by asking yourself some tough emotional questions. What are your fears: pain, loss of dignity, machines keeping you alive, or dying in a strange place? Fill in the blank: “My life is only worth living if I can ___”. Is life defined by a heart beat or a working brain? Whom do you want to make decisions for you if you are not able to communicate? Discuss options with your doctor. Seek guidance from your religious leader. Talk with family. Above all, make sure that family members know what your choices would be under a variety of serious situations; if possible, put your choices and values into writing.
The last days of life may be spent in a hospital, especially if you are seeking curative or aggressive medical treatment. If you are looking for supportive care, a hospice may be a better option. Hospice care enhances comfort and quality during the last days of life. This type of care seeks neither to hasten nor to postpone death, but rather to provide relief from pain and discomfort. While services may vary from community to community, in many parts of the country palliative care can be supplied either in a hospice facility or in your home. If you choose to stay at home, you will need to make special arrangements. A palliative care specialist can help tailor your care to what you need and what you want. They can also provide set up a support system for your entire family.
The first steps are often the most difficult. Here are pointers to get you started:
For most of us it is very hard to imagine how we are likely to feel when faced with a serious and potentially fatal illness or injury. It is perhaps only human nature to prefer to wait until the crisis is upon us and then communicate our intentions to the nurses and doctors providing our care. Unfortunately, there are many scenarios that can interfere with one’s ability to communicate. For example, it is very difficult to tell a doctor your treatment decision while on a ventilator (mechanical breathing apparatus) or when unconscious. Fortunately, there are legal solutions to this problem. Among these legal solutions are:
Advance directives are written legal documents that state your wishes if you can no longer speak for yourself. With these documents in place, medical personnel and loved ones don’t have to guess what you would prefer or make decisions you would not want for yourself. Since advance directives cannot predict every clinical scenario you may be part of in the future, also choosing a healthcare proxy is recommended.
names someone to make medical decisions for you when you are not able to make such decisions. This person should be someone you trust, who knows what treatments you would want or would reject, and who will respect these preferences. Your proxy does not have to receive specific instructions from you and can make decisions as if they were in your situation, but conscious and able to communicate.
A living will states your requests regarding life-sustaining medical treatment (for example, a feeding tube, breathing tube, or surgery) and is only effective if you are unable to communicate. These instructions for treatment or refusal of treatment can be made as broad or specific as you wish. For example, you can ask that your life be prolonged as long as possible whatever your state of consciousness, or you can state that you do not want extraordinary treatment to maintain life if as a result you will need constant care or not have an existence that seems of adequate quality to you. You can also address specific circumstances that commonly arise at the end of life (
A do not resuscitate (DNR) order instructs medical personnel not to bring you back to life if you stop breathing or your heart stops.
Each of these four legal solutions requires that you complete a document that will become part of your personal medical file. This way, you or your family members can ensure that, in the event of a hospitalization, all of your caregivers know about your written wishes and incorporate them into your care plan. For further information, you can talk to a lawyer, explore the numerous books written on this topic, or use the Internet resources listed below. Also, check your state regulations considering end-of-life care documents, as they may differ significantly between states.
It is important to note that advance directives are not iron clad, and no single one of the four choices above can anticipate every situation that may occur at the end of life. Since it is difficult to anticipate every medical possibility, a living will might not precisely address what actually happens to you. Additionally, no matter how carefully you try to think about what might happen to you as you write your living will, you still run the risk of this document being misinterpreted by doctors or family. So, even with a living will in place, it is still essential to have someone you trust—preferably named as a healthcare proxy—to make decisions for you in the case of unforeseen circumstances. Your proxy should know you well and spend considerable time discussing your philosophies, expectations, and values. Combining a living will with a designated proxy is a particularly smart way to prepare for your end-of-life care.
No one wants to think about the unpleasantness of life-support: whether its end result is to prolong our lives or to prolong our deaths. But when life support no longer offers hope of quality living, decisions must be made. No one can make such decisions better than you. Choose your options while you can speak for yourself.
Center for Healthcare Decisions
National Hospice Foundation
Canadian Hospice Palliative Care Association
Decisions series. Center for Healthcare Decisions website. Available at: http://www.chcd.org/docs/Dec.pdf. Accessed June 12, 2014.
Hill TE, Ginsburg M, Citko J, Cadogan M. Improving End-of-Life Care in Nursing Facilities: The Community State Partnership to Improve End-of-Life Care-California.
J Palliat Med. 2005 Apr;8(2):300-12.
Levy CR, Ely EW, Payne K, Engelberg RA, Patrick DL, Curtis JR.Quality of Dying and Death in Two Medical ICUs: Perceptions of Family and Clinicians.
Chest. 2005 May;127(5):1775-83
Last reviewed June 2014 by Michael Woods, MD
Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.
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