Anna knew she needed to stop drinking or suffer the consequences of liver failure. At 53, Anna came to the emergency department having a decreased level of consciousness, low blood pressure and bleeding from her nose and mouth. Her abdomen was the size of a basketball due to ascites – fluid in the abdominal cavity. Anna’s family members were not aware of her final wishes, but knew she had no intention to give up drinking.
My skilled colleague inserted a breathing tube and central line to manage Anna’s blood pressure, and to transfuse blood products. His plan was to admit her to the Intensive Care Unit. I asked if he needed backup. In particular, “Do you want me to cosign that Anna’s condition is terminal and medical care is futile.” He replied that this wasn’t necessary, but later announced to the nursing staff that Anna’s family agreed to her receiving comfort care. Anna died two hours later in the ICU.
Many physicians have more medical knowledge than common sense. They attempt to save lives and offer family caregivers hope rather than engage the tough conversations that concern letting a patient die. Terminally-ill patients have little or no hope of ever improving, yet develop infections, dehydration or difficulty breathing that physician can treat. The Golden Rule in emergency medicine is that any patient who comes into the ED – terminal or otherwise – is never refused treatment.
Why do family caregivers entrust the care of a terminally-ill loved one to physicians who tend to inflict harm through ICU admission? Terminally-ill patients are easily recognized, but not definitely diagnosed. Family caregivers often need some nudging to understand that their loved ones will not get better and that doing everything to save terminally-ill patients is abusive. Beware! Most physicians do not think of patients as terminal until every possible measure and medical intervention have been discussed and exhausted.
The Dartmouth Institute for Health Policy and Clinical Practice recently posted an article titled, “How do doctors make decisions when managing care for critically & terminally ill patients?” This study revealed that 4 out of 10 physicians intubated simulated terminally-ill patients against their wishes. These physicians claimed that spouses did not object to aggressive treatment. Although the study suggested physicians be better trained, terminally-ill patients and their caregivers would be better advised to defend themselves against “well-trained” physicians.
In recognizing terminal illness, family caregivers and ultimately a patient’s medical power of attorney need to ask themselves several simple questions. “Is the patient able to eat, breathe and move without help? Are they able to engage others and sometimes say “No” to their doctors? Do they still enjoy living? Are they able to pay medical and other expenses themselves? Are they incontinent?”
Total dependency implies a terminal illness exists, while semi-independent living might equate to chronic illness. Both situations make patients vulnerable, requiring guardianship by family caregivers and palliative care nurses. Think about this type of nurse as a nonmedical common-sense patient advocate. This nurse’s primary focus concerns the patient’s well-being, not the underlying medical condition. Ideally, patients receiving palliative care have entered a type of ”de-medicalized zone” (DMZ) that’s filled with compassion.
Medical personnel often provide aggressive treatment first and consider palliative care to be a last resort. Therefore, patients near the end of life are fearful of going to doctors or coming to the ED. Yet, family caregivers often insist their patients be evaluated by physicians or risk appearing negligent. How can family caregivers, paramedics and society in general better shield terminally-ill patients from physicians?
As a society, we need to form a pact and standard of care that defends the dignity of terminally-ill patients through providing them an apple (of knowledge) a day to keep the doctor away. Dignity is a not a medical term. It is best provided by non-medical professionals like social workers, case managers and spiritual leaders. Social workers need to pair chronic and terminally-ill patients with palliative care services. When the answer to the question, “Is he/she able?” becomes “No,” palliative care will permit patients to be “able” to die without direct physician intervention, false hope and/or mass confusion. The key to allowing the terminally-ill to die with dignity is through home-based palliative care.
To better understand the value of palliative care, consider patients having the power not have physicians intimidate them. Imagine patients having the wherewithal to say, “I receive palliative care,” thus providing evidence to the ED physician that they are in control. In other words, “Inform me of my palliative care rights before obliging me to medical treatment that might be unnecessary and prolong my suffering.”
Many patients and their caregivers are ill-prepared to make medical decisions and express final wishes. Appreciating the sensitivities of these matters requires a compassionate nurse, not an aggressive doctor who doesn’t have adequate time to listen and is liable for inaction. End-of-life conversation is best addressed at home before heading for the hospital, under the umbrella of home-based palliative care. When a medical condition takes a turn for the worse, comfort care is foremost and physician care is averted.
The best practice of medicine is critical care. The best practice of wellness is palliative care. Think of wellness as being an alternative treatment plan to physician recommendations. Become able to say, “No” to doctors when the suggested medical treatment appears worse than the illness. Learn how to remain in control of your own medical decisions. Read “Is Palliative Care Right for YOU?” and discover the secret of how to best manage chronic and terminal illness through reducing stress and gaining peace of mind.
A good death occurs when family members are bedside, and physicians have stepped aside.