by Robert A. Duke
“Modern Death: How Medicine Changed the End of Life,” by Haider Warraich, M.D., says modern technology and law have made death more complicated, so maybe you need to be more detailed about what procedures you want at the end of your life. Specifically, you might need to translate your wishes into clinical terms to state exactly what you want and don’t want done to prolong your life.
Old death was simple — your heart stopped beating, and you were pronounced dead. Today’s technology, however, can restart your heart or replace it with a mechanical device. Or you may receive a transplanted heart, or you can be put on a heart/lung machine until a solution is determined.
Your heart may be fine, but your brain is dead or ceased functioning. Or has it? New sensitive instruments may detect brain activity that suggests there is still life in your brain even though you are unresponsive. What to do?
And then there is coma. Your heart is beating, but a ventilator is required for respiration and nutrition must come from a feeding tube, and there are confusing signals from your brain, but no one can determine whether, if you regain consciousness, you will have any quality of life. But what does quality life mean?
Artwork by Hilary Cole
Warraich also points out the predicament of your appointed healthcare agent trying to cope with translating your general wishes into medically precise terms under the pressure of decisions in an ICU crowded with physicians and nurses standing over your unresponsive body. It may seem impossible, but you can still help yourself and everyone concerned about your welfare by revising your end of life documents by adding clinical terminology.
Even if you’ve already committed your end-of-life demands and wishes to writing — and too few (20 percent) have taken this vital step – you are encouraged to revise it by the “Modern Death” author.
Most Advance Care Directives (ACD) contain subjective information (and rightfully so) about your death, but little concrete medical information. For this reason, the Washington State Medical Association (WSMA) created a form to separate Physician’s Order for Life Sustaining Treatment (POLST) from the non-medical contents of the ACD and to highlight those life-sustaining decisions you are required to make (see POLST below).
Advance Care Directive and Power of Attorney
Having both an ACD (living will) and a durable power of attorney for health care will provide the best protection for your treatment wishes, says the WSMA at wsma.org.
The ACD is a legal document allowing you to answer in writing whether you want your dying artificially prolonged. This directive is used only if you have a terminal condition as certified by your physician, where life-sustaining treatment would only artificially prolong the process of dying or you are certified by two physicians to be in an irreversible coma or other permanent unconscious condition with no reasonable hope of recovery. In either situation, the ACD allows treatment to be withheld or withdrawn so that you may die naturally.
All 50 states have laws recognizing ACDs.
Glossary of Clinical Terms for ICU and ER Procedures
Consider revising your existing ACD by stipulating which of the following procedures you want withheld or applied for treatment at the end of life.
CPR (Cardiopulmonary Resuscitation): manual or machine chest compressions (100 per minute) to keep blood flowing when the heart stops.
DNR (Do Not Resuscitate): no CPR. Also termed NO Code or No CPR or No Shocking.
Dialysis: An artificial kidney machine removes fluid and waste products from the blood when kidney organs have failed.
DNI (Do Not Intubate): Do not place a breathing tube in the windpipe to connect to a ventilator.
Intubation: placing a tube down the throat into the lungs for connecting to a ventilator to breathe for the patient.
Tracheotomy: placing a tube through a throat incision into the trachea (windpipe) to help breathing. Often connected to a ventilator, it may be temporary or permanent.
Ventilator: a machine to assist or replace natural respiration for support of breathing through intubation into the lungs. Also called a respirator.
Feeding tube: a tube inserted through the nose down into the stomach for giving liquid nutrition when patients cannot swallow.
PEG (Percutaneous Endoscopic Gastrostomy): a tube placed through an incision directly into the stomach. Also called a feeding tube.
Perfusion: a description and measurement of the circulation of blood in the body that delivers oxygen to vital organs and removes carbon dioxide. In the context of this glossary, though, perfusion is a procedure to temporarily stop normal blood circulation to permit medication to be temporarily retained in a limb (for example) longer than it would be if blood circulation were normal.
Pressors: drugs administered by IV (Intravenous) to raise blood pressure. These drugs act like adrenalin and cause blood vessels to squeeze blood back to the heart so it can be circulated to organs.
IV: The simplest and most familiar IV is placement of a needle in a vein to directly inject fluids into the blood stream from an attached bag or drip device. Other specialized IV devices are called catheters, lines and ports.
PICC (Peripherally Inserted Central Catheter): A specially trained physician or nurse installs the PICC tube in a large vein near the elbow using local anesthesia. The catheter is advanced through the vein into the upper arm and shoulder so the tip is in the upper chest area. Similar to an IV line, it is used for administering medication and fluids.
Central Line (tunneled venous catheter): A specially trained nurse or physician inserts this line in a large vein under the collarbone or into a neck vein. The line goes under the skin with the tip usually in the upper chest. A local anesthetic and/or conscious sedation is used when it is put in to help with relaxation. Also called a Hickman catheter.
Implantable Port: A surgeon or radiologist installs the port, usually with local anesthesia or conscious sedation. The catheter tube goes into a large vein in the chest or upper arm. The port portion of the catheter is positioned under the skin in chest or arm. Also called a port-a-cath.
Imaging including X-ray (radiography), MRI (magnetic resonance imaging), ultrasound (medical ultrasonography), endoscopy, elastography, tactile imaging, thermography, medical photography and nuclear medicine functional imaging techniques such as PET (positron emission tomography) and SPECT (single-photon emission computed tomography). Though not generally thought of as an invasive procedure, imaging of acutely or terminally ill patients can be harmful because it involves transporting, prepping and scanning the patient, which can cause discomfort, exertion and apprehension. In the context of end-of-life, imaging may be a procedure to be declined as part of treatment.
“I’m not qualified to recommend what a patient should forego or not,” says Micki Jackson, coordinator for Reality of Advanced Medical Intervention. “But, from my personal view, I would forego any imaging procedures that would not reasonably lead to a better outcome. If the imaging would only lead to more ‘treatment’ without benefit of improved quality of life, I would decline.” Jackson was the primary caregiver to her late husband and sister and is involved in local healthcare reform and education.
As primary caregiver to my late wife, Shearlean Duke, I was appalled at the stress and hardship imposed on her by various providers involved with her imaging procedures. Routine imaging was required for 18 months to determine the status of her glioblastoma brain tumor. Late in her treatment she was confined to a wheelchair, and moving about was cumbersome and exhausting for both of us.
A hematologist was responsible for monitoring her chemo treatment, and he ordered her MRIs and scheduled her infusion sessions. We belatedly discovered that he was unable to read her imaging files, because he could not operate his computer in which the files resided. Consequently, we had to persuade her radiologist, who had completed her radiation treatment, to continue seeing her to review her imaging with her.
This same hematologist, we discovered, saw patients only on Mondays, Tuesdays and Wednesdays but would only schedule her MRIs for Wednesdays, which made her wait four days for the result. If he had ordered the MRI on Monday she could have the results on Wednesday. Other doctors in the same practice gave imaging orders to the patient for the patient’s convenience of scheduling their own imaging appointments, but this hematologist refused.
Palliative Care: a specialized medical care focused on providing relief from symptoms and stress, with a goal to improve quality of life for both the patient and the family. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment. Specially trained doctors, nurses and other specialists work with a patient’s other physicians and care providers.
POLST (Physician Order for Life Sustaining Treatment): a physician’s order form that lists treatments, procedures or interventions patients may or may not want.
Many states, but not all, have some version of this form. The one discussed here was originated by my wife, Shearlean Duke, for the state of Washington and was used for her ICU treatment immediately before her death from glioblastoma brain cancer on Feb. 2, 2011.
In 2007 or 2008, Shearlean and I filled out our POLST forms mainly to humor our primary care physicians. At the time, we were each offered counseling about the form, but frankly we didn’t know what to ask. Or more to the point, we erroneously assumed we understood what seemed like simple or obvious choices or instructions. In 2011, we were proved wrong.
Another mistake was that we thought this form was redundant with our Advance Care Directive. There is some overlap, but the directive covers much more than the physician’s orders. In fact, that’s one reason the WSMA created the POLST, to separate physician orders from the non-medical contents of the directive.
POLST Use Demonstrated
I arrived at Shearlean’s hospital room the morning she was to be discharged after an Emergency Room (ER) visit when she had difficulty breathing. Five healthcare providers surrounded her bed, talking with her about her POLST form on a clipboard one of them held. Not wanting to interrupt, I stood in the background and listened.
I then learned about the definition of “skilled nursing care” and the significance of antibiotics as they apply to the terms and conditions of a patient’s ACD. This whole topic came out of left field for me. I was stumped trying to imagine how we — how anyone — could foresee circumstances like we were facing now, when we signed off on our POLST form, or ACD, three years earlier.
As I listened, I actually recalled wondering about this particular clause in our POLST form, which required a decision about administering antibiotics at the end of life. To me antibiotics were an everyday treatment that had nothing to do with end of life. So we both answered “yes” to the question about whether we would accept treatment with antibiotics if we were terminally ill. I didn’t ask for an explanation, although a doctor could have explained it to us when we signed our directives.
I was discovering now that if antibiotics could not be taken orally, then they had to be administered intravenously (IV), which would require skilled nursing care. Since Shearlean could not swallow medication, her only options were to take them was IV or by a tube inserted through her stomach for administering antibiotics with a syringe. Antibiotics by stomach tube were considered the same as taking them orally. But this required being fitted with one of the dreaded end-of-life tubes everyone hopes to avoid by having an ACD in place when the time comes.
Fortunately, Shearlean was alert and had the capacity to decide about her treatment, and so I didn’t interfere. But I was saddened to see her burdened with such a decision, virtually on her deathbed as it turned out.
Since the contents of a POLST are controlled by the WSMA, no information can be added or deleted, it can only be revised by replacing it with one of a later date. For help see your primary care physician.
If you are persuaded to revise your ACD by including clinical terms as suggested here, you can do so by amending your ACD with an attachment specifying your choice of clinical terms. For local assistance with preparing an ACD, power of attorney for healthcare and related documents (including the POLST), contact the Whatcom Alliance for Health Advancement (WAHA) online at whatcomalliance.org. Besides individual assistance, WAHA also sponsors local quarterly public workshops.
Also see the Reality of Advanced Medical Intervention program presented by ICU Nurses Koala, R.N. and Cathy, R.N., B.S.N., and hosted by the Whatcom Dispute Resolution Center. For details see the website at whatcomdrc.org.
Robert A. Duke is author of “Waking Up Dying: Caregiving When There Is No Tomorrow,” he lives in Bellingham. His email: firstname.lastname@example.org