Do or Do Not
This past week I had the opportunity to talk to two caregivers. Both expressed extreme tiredness, bordering on exhaustion. One is caring for her mother, the other her father. The mother’s mental status is amazing for her age – almost 100 – but her body is giving out. The father has late-stage Alzheimer’s and everything about taking care of him is difficult.
But both of these dear caregiving daughters face the same impending outcome: according to doctors, neither recipient has very long to live. Of course, no one knows the number of our days but God. However, from a medical standpoint, their lives are waning.
As we talked, the subject of a “DNR” came up, and since we are focusing on end of life care, I thought this would be a good time to make sure you understand exactly what that is. You may already have one in place for your loved one and for yourself as well. A “do-not-resuscitate” (DNR) order is written by a physician at the request of an individual (preferred), the health care proxy, or members of the patient’s family. Ideally this decision is made by the individual while his or her health and cognitive abilities are still intact. Some people have a hard time doing this; others take it in stride. My experience has taught me that it is easier for the individual – rather than family members – to make this decision.
Just so you know, the individual can change his/her mind, but family members cannot override the decision once it is documented and signed by the physician. If a person becomes unable to make his/her own decisions, the legal health care agent can agree to a DNR, as can family members if there is no agent, but they cannot undo one.
Because there are some misconceptions about a DNR, I want to share some questions I have been asked by caregivers and my responses. Some of the information is repeated, but reading both letters should give you a clear understanding of the purpose of a DNR.
Question: I just found out that my grandmother – after talking with my dad who is her health care power of attorney – signed a “DNR.” She has untreatable cancer and several other health problems, but her mind is still basically intact. I visit her frequently at the nursing facility where she lives. I feel my dad should have encouraged her not to “give up” like this. What should I do?
Answer: Years ago, I took my dad to visit his life-long best friend at a nursing home. When I saw that this gentleman was wearing a bright orange DNR bracelet, I was shocked and saddened – because at that time I did not understand the exact implication of a “do-not-resuscitate” order. After nursing school and working seven years in long-term care (where many of the residents have DNR orders in their charts) I developed a much different view of this legal order.
Please do not see this as “giving up” on your grandmother. Since her mind is “basically clear” and she made the decision, it is comforting to know that when the time comes, your grandmother’s wishes will be respected. As a patient with a medically irreversible illness, she has chosen to avoid needless suffering and to die with dignity. It is important to remember that the medical directive of a DNR order applies to only these situations: if a patient’s heart were to stop or she were to stop breathing, cardiopulmonary resuscitation (CPR) or advanced cardiac life support (ACLS) would be withheld. A DNR does not prevent any other warranted medical treatments – pain medication, chemotherapy, dialysis, antibiotics, etc. – from being administered.
Many family members think the term “do-not-resuscitate” denotes that treatment is being withheld from the patient, and therefore, have reservations as you do. In some health care communities, “allow natural death” or “AND” is now being used because it describes what is being done instead of what is being avoided.
According to statistics only 5% of patients outside the hospital and 15% of hospitalized patients survive resuscitative measures. The very elderly, nursing home residents, and patients with advanced cancer or who have multiple medical problems are much less likely to survive attempts to restore life.
I hope this information helps you accept your grandmother’s decision. Now, what should you do? Well, if I were you, I would visit as often as possible, make each visit a lovely time together, reminisce with her, tell her how very much you love her, and pray with her. And remember, that all of our lives are ultimately in God’s hands.
Question: I am upset because my siblings support my dad’s decision to have his doctor sign a DNR. I believe he will live at least several more years and think this is a bad decision. What do you think?
Answer: As long as there was no coercion by any family members, I think this is your dad’s decision to make.
DNR is an acronym for “do not resuscitate,” and is sometimes referred to as “no code.” It is a legally binding medical order usually written by a person’s primary physician, which instructs health care providers to refrain from performing cardiopulmonary resuscitation (CPR) when someone’s heart stops beating or if someone stops breathing. Read this next statement carefully – it is very important and probably the most misunderstood fact about a DNR: A DNR order does not affect any other area of medical care, such as limiting medications or denying treatment (including chemotherapy or dialysis). It has absolutely no link to active euthanasia; if it did, I could not and would not advise anyone to sign a DNR.
When I speak about making preparations for end-of-life care, I often ask my audience to explain what a DNR means to them. Like you, many of them believe it means a cessation of medical care. I explain to them, as I often did to family members of patients, that a DNR does not take effect until a person has no pulse or is not breathing. Resuscitate is defined as “to revive someone from apparent death.” Obviously, you cannot resuscitate someone who is alive.
Some people choose not to have a DNR, and without a valid form, EMS is required to attempt resuscitation. Research shows that about fifteen percent of hospitalized patients who receive CPR are successfully resuscitated; outside a hospital setting the success rate is about five percent. CPR is less effective when performed on patients who have advanced incurable diseases, multiple medical issues or are elderly. When CPR is attempted in a nursing home setting, the success rate is very low, and the process may result in crushed ribs or the necessity for life-sustaining measures such as a ventilator. DNRs are often – but not always – part of a hospice care plan since the focus is to provide comfort care rather than prolong life.
You do not mention your dad’s medical condition or prognosis, but those are two important factors to consider when asking a doctor to write an order for a DNR. You do, however, state that this is your father’s choice. Even though this may be difficult for you to accept, I think you will agree with me that it is his decision to make. It may put your mind at ease to discuss your concerns with your dad and allow him to share with you how he and his doctor reached this decision.
Your dad has chosen – when the time comes – to die a natural death with dignity. I hope you will support him in this decision; but more importantly, that you will lovingly support and care for him every remaining day of his life.
If your recipient does not have a DNR order or if you have any questions about making this decision, I encourage you to talk with his/her primary care physician.