An Advance Directive is a legal document that states what the patient’s wishes are for either continuing or discontinuing certain types of life-prolonging medical care in the event of a terminal condition from which the likelihood of recovery is remote. Also called a Living Will or Health Care Directive, the Advance Directive is often set up at the time a Will is created by the patient’s attorney.
“Terminal condition” can be broadly defined but usually means advanced stages of cancer, Alzheimer’s Disease, severe stroke, heart disease, lung disease, renal failure, or other fatal illnesses, or even advanced age, all of which have a very limited prognosis. “Life-prolonging medical care” usually means cardiopulmonary resuscitation and artificial ventilation, but can also imply feeding tubes, dialysis, antibiotics, etc. Ideally these things should be spelled out specifically in the advanced directive, but often they are not. The physician must then discuss the specifics of care with the patient and/or family and make those decisions sometimes very quickly.
A statement as to the "Code Status" of a patient (regarding whether the person wishes to be resuscitated from an acute life-threatening event, like a cardiac arrest or respiratory arrest) is not the same as an advance directive, but this language could be incorporated into the advance directive if the patient wishes. The DNR, DNI ("Do Not Resuscitate", "Do Not Intubate") form that addresses this particular issue is usually a separate document and is signed separately from the advance directive, but should be kept with or attached to the advance directive. All of the patient's caregivers should have copies of these forms and the DNR, DNI statement, if there is one, should be posted in the home of the patient so that the Rescue Squad can readily see it if they are called to visit.
It is important to note that having an advance directive does not necessarily indicate or imply that the patient does not want to be resuscitated. In fact it may state just the opposite. For practical purposes from the standpoint of the Rescue Squad and Emergency Room physicians as well as the primary health providers, the DNR, DNI form, if there is one, is the most important one to know about and have on record.
Timing the discussion of the advance directive
Some physicians are reluctant to discuss advance directives with patients, even when it’s no longer in “advance”. This is an uncomfortable subject for doctors and patients alike. The doctor often doesn’t want to discuss it for fear it will create excessive anxiety or worry for the patient. This fear is probably not warranted most of the time because many patients, if they are ill or elderly, have already been thinking about their mortality. For some, however, the mere discussion of the topic while s/he is acutely ill can be anxiety provoking. Nevertheless, it should be discussed. If it is done in a calm, compassionate and non-frightening manner, most people will accept the discussion fairly well and some will be glad you brought it up.
The best time to discuss the advance directive and the code status, including the CPR, ventilator and/or feeding tube, etc is in a relaxed environment when the patient is stable and feeling well and usually in the presence of family members. The worst time is of course when the information becomes absolutely essential in the face of an acute life-threatening event. If in doubt or if the decision has not yet been made and a life-threatening event occurs, it’s always best to err on the side of being aggressive with life-saving measures. You can always withdraw the life support later if the family wishes.
There are many instances in which a conflict may occur between what the physician thinks is appropriate regarding the advance directive and particularly the code status (relating to whether or not to perform CPR or intubation specifically) and what the patient or family believes. This can usually be resolved by providing more information about the usually poor results of doing CPR in severely chronically ill or very elderly patients and the increase in suffering that usually occurs in patients having to undergo intubation and artificial ventilation.
Sometimes patients request an odd combination of life-supporting treatments - some that they want and some they don’t want. For example, a patient might say “Well just shock me twice and if it doesn’t work then let me go”, or “Do CPR for 10 minutes but don’t put me on a ventilator”. These requests result in confusing orders like “partial code” or “slow code” which means different things to different people and should be discouraged. You should explain to the patient that this is usually an all-or-none type situation. When the decision is made for “no life support” in the event of cessation of heartbeat or respirations, then an order should be entered in the chart as “DNR, DNI”, meaning “Do Not Resuscitate” and “Do Not Intubate”. This should be documented in the progress notes as well.
The official Advance Directive document usually states that if the patient is incapacitated, the next of kin should be the primary decision-maker unless the patient has previously directed that another person assume this role by a legal document called “Power of Attorney”. If the primary decision-maker is not sure what to do, it helps to ask what s/he thinks the patient would want to have done if they were able to make the decision. If that fails, ask what they would want to have done themselves if they were in the same situation. If that fails, you may say what you would do if you or your family member were in this condition, knowing what you know about the outcomes of similar cases.
Sometimes families are split in their decision on this subject. It's always best if they can reach a consensus among themselves, but if not, the decision ultimately lies with the next of kin.
One of the most difficult scenarios in which to be involved is when the attending physician and the consulting physicians feel strongly that further aggressive care including CPR or ventilator care is not warranted due to the terminal nature of the patient’s illness, but yet the patient or family insists on continuing all extraordinary efforts despite the futility of the situation.
This occurs in many situations where the patient or family has not had time to grasp the situation particularly in the event of an acute episode of illness, or there may be some unrealistic denial about what’s happening. Sometimes the family may have guilt feelings perhaps because they didn’t feel they spent enough time with the patient in the past. Their adamant refusal to “give up” on the patient helps them to placate those guilt feelings because they feel they are now “helping” the person by keeping them alive.
Sometimes this occurs because of a religious belief that we should do everything we can to keep someone alive and that when God is ready to take him/her, then the person will die. Unfortunately, these situations usually result in a prolonged state of suffering for the patient because he/she is too sick to ever get well, and yet we have the technology to keep him/her alive for a long time.
In some states, doctors do have the legal right to declare a state of futility and can withhold CPR or ventilator treatment on that basis. However if this is against the family’s wishes, you still may end up with a legal battle on your hands, which is one thing none of us want to get into if we can avoid it. The best thing to do is to keep talking with the family about it periodically and try to help them understand that this extraordinary treatment is unnatural and is prolonging suffering. If you have a Palliative Care Team, an Ethics Team or a Chaplain Service, you may wish to enlist their help. Ultimately, there should be a consensus about what the right plan and goals should be – always keeping the patient’s best interests in mind.
Make sure the patient and family understand that a “DNR/DNI” order does not mean that you’re “giving up” on the patient. Reassure them that the patient will continue to receive all of the usual medication and that the health care team will continue to provide all the care that the patient needs short of CPR and ventilator support. Incidentally, it would be good to make sure the other caregivers understand this as well. I have had situations occur where a patient would have a significant medical problem during the night, but the doctor was not called and nothing was done to help the patient because s/he was listed as DNR/DNI. This is not what that order means. The patient still needs to receive all the same treatment and care s/he would have received before except for the CPR and intubation in the event of a cardiorespiratory arrest.
Occasionally, if a patient or family are reluctant to consider a DNR order, and if the situation appears futile, the physician may state in a compassionate but firm way that it is just not medically indicated for the person to undergo the indignity and prolongation of suffering associated with CPR and ventilator support. Sometimes, the family wants the physician to make the decision for them. They don't want to feel the guilt that may arise afterwards associated with the thought that it was their decision that "killed" the patient.
If the disagreement is strong enough between the doctor and the patient or family on this issue, the doctor may not feel comfortable continuing to care for the person from an ethical standpoint and may wish to turn the patient over to another physician. This should be done with the patient’s/family’s knowledge and the transition should occur smoothly with good communication between the two physicians.
There is another level of care beyond the DNR/DNI status, called “Comfort Measures Only”. This is used in situations where the patient is near death and either the patient or the family in conjunction with the attending physician have decided that all medical diagnostic studies and treatments should be withheld unless it is necessary for the comfort of the patient. This includes avoidance of all xrays, blood drawing, needle sticks, antibiotics, etc. In this instance if the patient has a defibrillator implanted it should be turned off so the patient won’t be given an electric shock if or when a life-ending arrhythmia occurs.
When discussing these issues regarding advance directives and code status with the patient or family, always do so with concern and compassion. If they are having trouble making a decision, try to be patient and understanding. These are life-changing events for these people even though it may just be another day in the life of a physician. Never be abrupt in these situations no matter how busy you might be. Your words and actions in these moments with the family will be forever remembered by them. Always be kind, calm and considerate of their feelings, and always keep the patient’s best interests at heart as your guide.
A Death Prolonged: Answers to difficult end-of-life issues like code status, living wills,do not resuscitate, and the excessive costs of terminal medical ... that leads to suffering and financial waste.
This page was last updated on October 19.2019.