End of Life Care
by Dianne Scheinberg, MS, RD, LDN
Medicine today has the power to prolong life. Many of us will live longer because of medical advances and prevention. We may also have our last days or months prolonged by life support. However, keeping the body alive does not always mean keeping quality of life.
Life support can breathe for us, feed us, and take over for some vital organs. It is meant to be a bridge until you heal. Sometimes however, it simply prolongs death or maintains a poor quality of life. For this reason, more doctors, patients, and families are turning to end of life care. It focuses on the dignity, quality, and sanctity of life if a cure is out of reach. These terms have different meanings for each of us.
So, who gets to decide what care is life-saving or death-prolonging? With some planning, you do.
There are many parts to end-of-life care. They include emotional and philosophical concerns, legal steps, and types of care. It is important that each of us should think about these factors ahead of time. Ideally it is done with legal support before a medical crisis occurs.
Emotional and Philosophical Matters TOP
You can begin by asking yourself some tough emotional questions:
Seek guidance from others in your life such as family or religious leaders.
Above all, make sure that family members know what your choices are. If possible, put your choices and values into writing. Make sure people know where these are written down.
Legal Options and Medical Orders TOP
For most of us it is very hard to imagine how we will feel when faced with a serious and perhaps fatal illness or injury. It is perhaps only human nature to wait until the crisis is upon us. Unfortunately, you may not be able to share your choices at that time. You may be unconscious or be mentally altered. Fortunately, there are legal solutions to this problem such as:
Advance directives are written legal documents. They state your wishes if you can no longer speak for yourself. It gives your medical team and loved ones guidance so they don’t have to guess what you would prefer. It can prevent them from making decisions you would not want for yourself. Advance directives often include:
Naming Healthcare Proxy
A healthcare proxy is someone you choose to make medical decisions for you, if you are unable to do so. They will only make decisions when you are not able to make them for yourself. It is also called power of attorney for health care.
This person should be someone you trust. It is important for them to know you well. Your proxy does not have to have specific instructions from you. You should share what general treatments you would want or not want. They should also know if you have other documents like a living will.
A proxy plus a living will is a more secure way to prepare for your end-of-life care.
A living will states what advanced care you want or don’t want. For example, would you want a feeding tube or breathing tube. Would you want a surgery that will not cure you but will help you live longer?
A living will is only used if you are unable to tell your medical team what you want. These instructions for treatment or refusal of treatment can be made as broad or specific as you wish. For example:
Do Not Resuscitate or Do Not Intubate
A do not resuscitate (DNR) order instructs medical people not to bring you back to life. It comes into place if you stop breathing or your heart stops.
A do not intubate (DNI) order instructs medical people to not use a breathing tube. The tube is needed to help you breathe. These orders are usually only made by people who are in end-of-life care. A doctor must sign the order before it will be carried out.
Physician's Orders for Life-Sustaining Treatment
Physician's Orders for Life-Sustaining Treatment (POLST) is a different type of medical order. It is a plan made when you have a specific illness or have become very frail. POLST is created with your medical team to make your wishes clear as it relates to your health issues. It may include a DNR, DNI, decision on feeding tubes, and other advanced medical care steps. You and your doctor can talk about what care may be needed so you can decide what you want.
The POLST is a medical order. It remains in your medical records. This will allow it to move with you from one setting to another. Even emergency staff will be able to access it to make sure your wishes are followed. This form is easier for your medical team to access than legal documents like advanced directives.
You will need to fill out documents for each of these solutions. It will become part of your personal medical file. For more information, you can talk to a lawyer, look for books about this topic, or use the resources listed below. Also, check your state rules for end-of-life care documents. They can be different between states.
Care Options TOP
The last days of life may be spent in a hospital. This will probably true if you are seeking a cure or aggressive treatment.
Hospice may be a better if you are looking for supportive care. The sole focus of hospice care is comfort and quality of life during the last days of life. This type of care does not aim to postpone or speed death. It is instead focused on relief from pain and discomfort. This is called palliative care. It also includes decreasing mental stress.
Palliative care may be given in a care center or in your home. If you choose to stay at home, you will need to make plans with your care team. A palliative care specialist can help to plan for what you need and what you want. They can also set up a support system for your entire family.
No one wants to think about end of life. But when life support no longer offers hope of quality living, decisions must be made. No one can make such decisions better than you. Advanced decisions can give you a voice when you can’t speak. It can also reduce stress on you and your family. Start talking with family and friends today.
Center for Healthcare Decisions
National Hospice Foundation
Canadian Hospice Palliative Care Association
About the National POLST Paradigm. National POLST Paradigm website. Available at:
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Accessed July 24, 2017.
Decisions series. Center for Healthcare Decisions website. Available at:
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Accessed May 11, 2016.
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;8(2):300-312.
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 May 2017 by Michael Woods, MD
Last Updated: 8/23/2018
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