GRACE :: Coping with Cancer / Social Work


The Delicate Issue of the DNR Order

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Hello again! I’ve been looking at the discussions posted on GRACE, and noticed that there have been quite a few references to both do not resuscitate (DNR) orders and living wills, so I thought I’d put my two cents in as well. Like Dr. West and Dr. Sanborn, I also have both of these completed, and have had for many years. There must be something connected to working in the health care field that makes us more aware of the need for such documents.

The most important aspect of thinking about having these instructions is to make certain that your wishes and desires about such issues as how aggressive you would want your care to be if you were declining to the point that you could not speak for yourself, whether you wish to have a funeral service or not, what you might want said about you and your life in a eulogy, and all of the end of life care decisions that may need to be determined. I would hope that any of you reading this column today have already completed these documents some time ago. It is always so much easier to think about these issues when you are not ill and struggling with treatment, but if you have not done so already, perhaps reading this will help crystallize your thoughts.

In many states, there is a document called POLST, which stands for Physician Orders for Life-Sustaining Treatment. In Washington state, this is a bright green form that is intended for use by physicians to write orders that indicate what types of life-sustaining treatment you want or do not want at the end of life. The POLST form asks for information about: your preference for resuscitation; medical conditions; use of antibiotics; and artificially administered fluids and nutrition. The POLST form is voluntary and is intended to help you and your physician discuss and develop plans to reflect your wishes; to assist physicians, nurses, health care facilities, and emergency personnel in honoring your wishes for life-sustaining treatment; and to direct appropriate treatment by emergency medical services personnel. A physician must sign the form in order for it to be a physician order that is understood and followed by other health care professionals. The completed form is a physician order form that remains with you if you are transported between care settings, regardless of whether you are in the hospital, at home, or in a long-term care facility. The best thing about this form is that it basically requires the patient and his physician to discuss these situations together so that your intentions are clearly understood and honored by your physician.

Of course, even if you don’t live in a state where POLST forms are used, the links above can give you a great sense of the issues to be addressed. They may help you generate your own thoughts on these subjects and assist in writing your own DNR and living will documents. The decision to have written directives is a very personal one. The best way to make your wishes known is to put it in writing. Some people find it comforting to have written directives; they feel it eases the load of decision making for family and friends.
Some of you may have already completed documents such as the Advance Directives for Health Care, which are authorized in most states, and chosen a representative to act as your Durable Power of Attorney for Health Care. If you have completed these documents, you should clearly discuss the ramifications of your decisions with the important people in your life: your spouse, your children, your physician, your health care representative, and your siblings. All too often, I have seen families disagree when their loved ones are dying, because they were not informed about the decisions made by that person when they were in a position to do so. Adult children who live far away often feel tremendous guilt because they were not there to be with their loved one as the disease progressed, and parents often do not inform their adult children as well as they might, in an attempt to shelter them from the truth (I suppose the protective parent instinct never goes away). This is why I feel it is so important to make a copy of the forms you sign to direct your health care and send them to your adult children, or at least discuss these directives with them.

Finally, I would just like to clarify what are considered life-sustaining treatments. There are several medical interventions that can lengthen a person’s life, delaying the moment of death. These are:

  • cardiopulmonary resuscitation (CPR): this may be inappropriate for certain patients such as those in the process of dying due to terminal illness, or those with an incurable illness, as its use would only lengthen the process of dying.
  • respirator/ventilator: a ventilator may not be appropriate for a patient with a terminal illness, because the use of a ventilator may only prolong the process of dying. In addition, ventilators can be uncomfortable for the patient and often require that the patient be sedated in order for them to tolerate it. The decision to take a patient off a ventilator is extremely difficult for families to make — it is far easier not to put a patient on a ventilator in the first place if the patient has a terminal illness.
  • artificial nutrition and hydration: when death is certain or there is no hope of for recovery, the use of artificial food and fluids may only prolong the process of dying. Generally, enough fluid is given to keep the patient as comfortable as possible.

Life-sustaining treatments do not include procedures or medication given to relieve pain. A decision to forego life-sustaining treatment will in no way affect the care given to provide comfort and reduce pain. Supportive care given for comfort and pain relief will always be provided. And remember, you may change or cancel a Health Care Directive or Durable Power of Attorney for Health Care at any time. Simply destroy the document, put your change in writing, and tell your doctor, nurse and family about the change. If you change the directive, give new copies to all of the important people involved.

As usual, I appreciate your comments, questions and any ideas you might have for another column!

Bye for now! Leah

6 Responses to The Delicate Issue of the DNR Order

  • Dr. Weiss says:

    Thanks for this excellent post. I’d like to offer one physician’s perspective on these types of orders. Planning for what you would wish if you should become sick DOES NOT imply any lack of fight or optimism for successful therapy. It simply represents planning to make sure that your wishes are known in the case things go that way. I have discussed living wills and DNR statuses with patients for whom I have every hope of them getting better; I think that it’s part of good care–you can only know your patient’s wishes if you ask. Similarly, as a patient, you should feel free to bring these issues up with your family and doctor when you are doing well–he or she will not in any way think that you’re “giving up.”

  • Dr West says:

    Agree completely! By making this routine, it removes the misconception that these are issues you don’t discuss until a patient is on his or her “death bed”. It should be like a regular will, and Leah is very correct in saying that it helps remove the burden from family and friends and doctors trying to surmise what a person would want. The little work that has been done on the subject shows that doctors in particular are not good at divining the preferences of a patient, so we shouldn’t presume that we’re better than we are. But that means that patients and families need to understand that these topics shouldn’t be “taboo” for discussion.

  • recce101 says:

    Here’s an idea for families who find it difficult to prepare or even discuss such documents. The next time a friend or relative dies or becomes seriously ill, use that as the motivation (pretext?) to make the needed preparations within your own family. This removes the question of “why are you bringing this up now” and may help break the ice for any family members who tend to avoid end-of-life issues. Make it a family project.


  • Catharine says:

    Leah –

    Thank you for a wonderful post on a difficult topic. One of the first “administrative” tasks I performed after my diagnosis last year was to prepare an Advance Directive in cooperation with my HMO, including notarization. It was VERY hard because I considered myself simply too young and I was so angry at what had happened to me. But doing this seemed to give me a sense of control at a time I needed it. I did not think of preparing the directive as “giving up”, but rather as “taking charge” where I could.

  • Dr Pennell says:

    I would echo the comments above, and stress that the most important element of all of this is not the papers or legal maneuvering but the discussion with your family and loved ones. All of the legal papers in the world do you no good in a safe in your house if your spouse or adult children don’t know what you would want near the end of life. Aside from putting an undue burden on them to decide major care decisions for you, in my experience the family default option is to be more aggressive, which differs from what many people would wish in that situation. My wife and I sat down soon after our marriage and discussed this for ourselves!

  • Catharine says:

    Dr. Pennell –

    Good point about sharing plans. The manual for preparing the Advance Directive provided by my HMO suggested giving copies to family and to keep a card in your wallet that tells where your directive can be found. They even provide a template for this card in in the manual. They also provide a template page where you can document the date of the Advance Health Care Directive, the location where you’ve put extra copies, and all the people and facilities to whom you’ve given the directive.

    Finally, my first oncology social worker suggested making a copy of the directive, placing it in an envelope, marking that envelope with a bold red cross, and taping it to my refrigerator. He said that EMTs were more likely to see this if they responded to an emergency when no one else was there to speak for me. I haven’t quite taken that step yet, but all involved family members have a copy of my directive.

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