Anyone who has presented to a hospital with some type of ailment in the last 10 years or so has been asked about advanced directives, a living will and/ or medical power of attorney. What are these things? What do they do? Better yet, you may ask: what are they intended to do?
Advanced directives are legal documents prepared while an individual is of sound mind that indicates his or her wishes with regard to medical decisions to be made in the event that the same individual becomes incoherent, comatose, or unable to make decisions for themselves.
These directives are intended to instruct the care-providers with regard to various medical interventions should their condition warrant intervention. These can be as “simple” as resuscitation orders (being “coded,” “shocked,” being intubated and/or placed on a mechanical ventilator), or they can be more complex such as gastric feeding tubes if one cannot eat by mouth, dialysis should one’s kidneys fail (even temporarily), intravenous fluids or intravenous nutrition, blood transfusions, surgical procedures if the condition is deemed terminal, pacemaker/defibrillator placement, and many other form of possible medical intervention. A living will is a form of advanced directive that is less precise, but it is a legal document indicating a patient’s wishes with regard to end-of-life or terminal-condition medical care without assigning a medical power of attorney. A medical power of attorney legally identifies an individual, who is intimately trusted by the patient to make appropriate decisions with regard to medical care in accordance with the patient’s wishes should the patient become incapable of making those decisions. The American Academy of Family Physicians offers good information with regard to these topics.
How well does the medical community deal with these issues?
This is all well and good from the patient’s perspective, but where do the physicians and other medical care providers fall in line with such legal documents and end-of-life ethical decision-making? According to an electronic survey of 10,000 physicians in 2009 by Medscape on medical ethics, a physician’s personal bias and personal beliefs played a role in their approach to end-of-life care. A second article from Medscape dealt specifically with end-of-life issues.
When queried as to physicians recommending or administering life-sustaining therapy, when one judged it as futile (otherwise terminal condition), 23.6% of the respondants (~5,300) said “yes”; 37% said “no”; 39.4% stated that their decision was situational. The second end-of-life ethical dilemma involved whether the physician would withdraw life-sustaining care in accordance with family wishes even if the physician thought it was premature; the results showed that 54.5% would NOT withdraw care while 16.3% would withdraw care, leaving 29.2% deciding upon the actual situation. Let’s not overlook that astounding number – only 16.3% said they would follow the patient/family’s wish to withdraw care!
Various rationales were cited as to why these physician-respondents held such opinions. Some questioned the motives of the patient’s family members, while others noted fear of litigation for providing medical interventions. The very definition of “futile” took on both curative and palliative connotations. The legitimacy of advanced directives were also questioned since these can become viewed as stagnant, especially if created 5 or 10 years earlier while the patient was in a different mindset. Keep in mind, people do change their mind, as do their perspectives with age, experience and wisdom. Likewise, advanced directives need to be changed, modified or simply updated periodically to reflect such changes.
The Terri Schiavo lesson (if there was one)
The Terri Schiavo story brought the whole end-of-life ethical decision-making into the limelight in 2005. This very sad story was in the headlines every day as legal maneuvering played out on national television. People were divided on “who was right,” and they will always be divided. These decisions are personal. They are difficult to share and discuss with family members, let alone physicians, who are admitting patients for the first time. In Maryland, physician assistants have been required to acquire continuing education hours in end-of-life care on a yearly basis for the last 10 years! This is a critical step in understanding the terminal stages of disease as well as the psychologic impact it can have on patients and their families. Being comfortable with the discussion of death and dying, and doing so with dignity, is a key component in the management of end-of-life decision-making.
A Personal Experience
On a personal note, as a practicing physician’s assistant, I have been involved in end-of-life decisions with several family members as well as patients presenting to the ER in my 13-year Emergency Medicine career. The family members I have encountered have run the gamut from cancer-related deaths to brain hemorrhages to congestive heart failure leading to kidney failure.
One memorable, personal, family incident that sticks involved a relative, who had been living with a stroke, chronic lymphocytic leukemia followed by the development of large cell lymphoma. The two different courses of chemotherapy for the lymphoma resulted in damage to his heart, causing episodes of ventricular tachycardia (a life-threatening heart rhythm); however, the lymphoma had returned, and he couldn’t eat due to illness. His options with regard to the cancer were extremely limited with an extremely poor prognosis, but the cardiologist wanted to insert a defibrillator in case the ventricular tachycardia re-occurred; the defibrillator would deliver an internal shock to the heart to return it to a normal rhythm and prevent death. Well, what is worse in this case – dying from a painless, silent heart dysrhythmia or suffering from malnutrition and systemic pain from the cancer that was everywhere in his body? This situation required forcing both the oncologist and cardiologist to meet with my relative and with the our family to discuss each option and the prognosis. My relative decided he wanted to go home as soon as possible without the defibrillator; he died within a few days, silently and by all observations – peacefully. That was his choice, and it was honored after convincing his caregivers to abide by his decision.
It’s not Marcus Welby who will be taking care of you
Our current medical system is so over-burdened with patients at every level of care that the days of the old-fashioned family doctor who still admits his or her own patients and “rounds” on them every day (in addition to fulfilling their office obligations) are long-gone. Some patients are admitted to “hospitalists” (whom they have never met before) while others get admitted to whomever might be on-call in any variety of specialties (whom they also have never met before). Specialty medicine is just that……they focus on their particular specialty (as in the case of my relative). So, having a heart-to-heart discussion with your trusted family physician regarding your beliefs about end-of-life issues many (if not most) times never translates to the acute medical condition that lands you in the hospital. Even nursing home patients with DNR (do not resuscitate) forms can be ignored if they are not properly completed or the patient is not wearing the matching bracelet!
It seems that not only do patients need to be educated about the benefits of an advanced directives, living will and power of attorney, but physicians also need to be educated regarding compassionate, end-of-life and terminal care involving the whole being, such that they can communicate with family members, accept advanced directives and offer solutions to the dilemmas often faced by confused and emotionally drained family members faced with such situations.
Just as there should be dignity with life, there should be dignity with death. It is the responsibility of both patients and providers to ensure this aspect of the human condition at whatever stage of a patient’s illness.
Have YOU ever been faced with such a situation?
Have you ever been faced with a situation where you were asked to make care decisions without an advanced directive? Have you ever found yourself in a situation where there was an advanced directive but the physician would not abide by it? Do you believe that it is a patient’s right to determine how they want to die and what medical interventions should be withheld under certain circumstances? How did YOU deal with such a situation?
Photo from enrichmentjournal.ag.org