What medical procedures would you want if you were too ill to speak for yourself?
That is the basic question all advance directives address. But it is unanswerable for anyone who is not both a physician and a fortuneteller, who knows what illness you will have and what therapy options you will face.
What is your goal?
The overarching guideline to an advance directive is the patient's goals of care. Goals of care change as cancer reveals itself. If the disease becomes chronic or terminal, goals evolve as well. Over time, treatments like chemotherapy, radiation and transfusions may be reconsidered, while a Do Not Resuscitate (DNR) order or feeding tube may be considered for the first time. Addressing pain management is important in advanced cancer.
If the goal of care is to be at home with family, calling an ambulance or being admitted to the hospital is not in your best interest. Your doctor can sign a Do Not Leave Home (DNLH) order that tells an emergency medical technician you do not want to be taken to the hospital or emergency department. See below for other doctor's orders.
Only in the event of serious illness
Even with an advance directive in place, if you become ill or injured with expectation of a full recovery and return to your regular routine, your advance directive is not pertinent. An advance directive is enforceable only when you are seriously ill and cannot speak for yourself.
Care you do want
Listing the therapies you do not want does not preclude you from getting the treatment you do want. While the natural dying process is permitted to occur, maximum comfort should be assured for the patient. Family members, or those you consider family, also receive comfort care during this time.
Comfort care can include the following, and more:
- Treatment for pain
- Treatment for nausea
- Preventing/addressing bedsores
- Spiritual care for patient and family
- Psychological care and emotional support for patient and family
- Any care that eases pain and suffering
- Receiving skin care with body lotions
- Receiving routine moistening of mouth and eyes when drying occurs
- Having loved ones be able to visit at any time
- Receiving gentle massage and passive range-of-motion exercise to prevent stiffness
- Having favored music played
- Arrangements to donate your organs after your death
- Arrangements to undergo an autopsy after your death
Some orders must come from your physician, who uses a specific form recognized by the medical community. A Do Not Resuscitate (DNR) order is probably the most familiar, but there are others used to convey a patient's wishes. For example, active comfort care orders might include Allow Visitors Extended Hours (AVEH) and Inquire About Comfort twice daily (IAC b.i.d.).
Any physician order in your medical or personal files should be re-evaluated periodically. Does it reflect your wishes? Does it reflect your current medical needs?
Physician orders include:
- Allow Visitors Extended Hours (AVEH) order
- Full Comfort Care Only (FCCO) order
- Do Not Intubate (DNI) order
- Do Not Defibrillate (DND) order
- Do Not Leave Home (DNLH) order
- Do Not Resuscitate (DNR) order, also called an Allow Natural Death (AND) order
- Do Not Transfer (DNTransfer) order
- Inquire About Comfort (IAC) order
- No Intravenous Lines (NIL) order
- No Blood Draws (NBD) order
- No Feeding Tube (NFT) order
- No Vital Signs (NVS) order (Source, found 6-5-2015)
Put your thoughts in writing
As you complete your advance directive, think about the benefits and burdens of these therapies, and put your thoughts in your advance directive. In the event that you cannot speak for yourself, your advance directive will help your healthcare surrogate, your family and your physicians to know what your values are and what choices you have made.
Therapies for Ill Patients and Families
Antibiotics—for infections in the urinary tract, due to bedsores, from aspiration pneumonia, or the like
Artificial nutrition—nutrients provided via a tube into the stomach, intestine or vein
Chemical code—permits the use of drugs, but not cardiopulmonary resuscitation (CPR), for resuscitation
Continuous positive airway pressure/Bilevel positive airway pressure (CPAP/BiPAP)—delivery of oxygen through a mask
Cardiopulmonary resuscitation—mouth-to-mouth resuscitation
Defibrillator or pacemaker—a device implanted in the patient to deliver a therapeutic electric shock to treat irregular heartbeats
Do Not Resuscitate order—instructions not to perform cardiopulmonary resuscitation if heart or breathing stops
Feeding tube—nutrition through a tube down your throat
Intravenous (IV) fluids—nutrition via fluid through a vein
Total parenteral nutrition (TPN)-nutrition delivered through a needle or catheter placed in a vein. Also referred to as hyperalimentation
Transfusions—often of blood or blood products