Friday, June 21, 2013

More on Advance Directives

Earlier this month I blogged about advance directives and how they came to be accepted here in the U.S. In response to that blog, Sarah Glenn shared a story about her father. 

She wrote: "My father made sure we all knew his wishes once he knew he wasn't going to live much longer. It spared us from several hard decisions. Not everyone has this 'luxury' of time, though."

Sarah is right when she says we don't all have the luxury of time on our side. Sometimes events catch us unaware of the long-term implications. 

To prove that point, let me tell you about my nephew. Neil was a healthy 42-year-old bachelor who loved sports and the great outdoors. Last November, after spending three days in bed with flu-like symptoms, he suddenly collapsed on his bedroom floor. When the paramedics arrived, they found him in cardiac arrest. He was resuscitated, but never regained consciousness. After two days on life support in the ICU, he died. The diagnosis: septic shock due to a massive infection. 

Neil never filled out advance directives, nor did he assign anyone as his Power of Attorney for Health Care, even though he was a surgical tech at a large hospital and knew the value of such forms . When he became ill, his mom figured that, as next of kin, she'd have some say in his hospital care. But because of the HIPAA privacy act and the lack of advance directives, she was told she had no legal right to consult with his doctors, nor could she request an autopsy after Neil died. To this day, my sister-in-law wonders what caused the infection that killed her son. 

Neil's death taught the entire family a hard lesson: you're never too young or too healthy to consider filling our advance directives. 

So what are the various types of advance directives? 
The first is called a Durable Power of Attorney for Health Care. A DPAHC is a legal document recognized by all fifty states. It names a person who will make health care decisions for you if you become mentally incapacitated due to illness and are unable to express your wishes in any manner whatsoever. A DPAHC should be made before you become ill, at a time when you can discuss your wishes with the person you name as your agent. If a life-threatening event occurs, do you want to be placed on a ventilator? Do want a feeding tube inserted? Do you want to be kept alive artificially? These decisions are yours to make and your agent's to carry out in your name. 

A Living Will lists information provided by you concerning your decisions regarding medical treatment. It provides that information to your family, your DPAHC agent, your doctor, and any other healthcare providers you come in contact with in a hospital or nursing home setting. 

A Living Will is a formal document, but unlike a DPAHC, it is not legally binding in all states. If you have both a DPAHC and a Living Will, you can be pretty sure your wishes will be followed. If you only have a Living Will, your wishes can be dismissed by family members who feel differently than you do about certain medical procedures. Examples of this occur all the time, especially when it comes to feeding tube placement and use of ventilators to artificially prolong life. Doctors can also ignore Living Wills and order medical and/or surgical interventions that you would refuse if you were able to make your own decisions.

If your state is like mine (Illinois), you can download a DPAHC from your state website. The wording of the document can change slightly from state to state, so it is best if you check locally before downloading a generic version of a DPAHC. Donor registration forms can also be downloaded from your state website.

A third form you will want to consider is a simple DNR, or Do Not Resuscitate, advance directive. On this form you can chose if you want to have CPR performed if you suffer a full cardiopulmonary arrest, meaning both your heart and your breathing stops. CPR in this case includes chest compressions and endotracheal intubation (insertion of a breathing tube) with patient placement on a mechanical ventilator.

A newer and better kind of DNR form is known as a POLST -- Physician Orders for Life-Sustaining Treatment. Using this form you can chose to accept or refuse CPR; accept or refuse artificial nutrition through tubes mechanically placed down the nose or surgically placed into the stomach; ask for comfort measures only, including oxygen and pain medication; accept or refuse IVs, antibiotics, and breathing machines other than ventilators (BiPAP and CPAP); accept or refuse intubation and placement on a ventilator.

Both the simple DNR form and the POLST form need to be signed by a doctor after consultation with the patient. This can be done during a normal office visit or in a hospital setting.

Despite advances in CPR, a 2010 study reported in Cardiology Today found that people who suffer a cardiac arrest have an arrest-to-hospital-admission survival rate of only 23.8%, and an arrest-to-hospital-discharge survival rate of only 7.6%. The study covered 142,740 patients who suffered cardiac arrest between 1950 and 2008. 

Currently, only 8% of patients who suffer cardiac arrest survive to hospital discharge; the other 92% spend their remaining days in hospital ICUs. Of those who survive, most suffer neurological damage; only 3% to 7% return to their previous level of functioning.

Broken down into understandable numbers, this means that for every 1000 people experiencing cardiac arrest, only 80 survive to hospital discharge. At best, only 5 of those 80 people return to their previous level of neurological function. 

That's something to think about before you tell your doctor, "If my heart stops, I want everything possible done to prolong my life." 
It's especially true if you're a senior citizen. People over 65 have a lower rate of survival after cardiac arrest than those younger than 65. 

Despite all the statistics, a recent poll of baby boomers -- the 76 million folks born between 1946 and 1964 -- showed that 62% of the respondents believed they were too healthy to bother with filling out advance directives. 

To my way of thinking, that's akin to sticking your head in the sand. 

What do you think?

Thursday, June 6, 2013

Advance Directives -- Do You Need Them?

Last week I answered a writer's question about a scene in which a woman pulls the plug on the ventilator of a patient in ICU. In the course of my answer, I mentioned a form called a Durable Power of Attorney for Health Care. The illustration on the left (courtesy of Cleveland Clinic) shows how a DPAHC is only one part of the umbrella called Advance Directives that protect a person's legal right to participate in medical decisions and accept or refuse medical treatment. This right includes personal decisions involving end-of-life care that mirror the person's values and beliefs.

Are advance directives important to a writer? Well, you could throw in a nasty little twist to your story if a character produces a false DPAHC form in order to hasten Aunt Lizzie's death and thus inherit her estate.

On the whole, though, advance directives are more important to you as a person than as a writer. 

As we all know, s**t happens, regardless of our age or present health. The most famous example of this is the 1983 case of Nancy Cruzan. At twenty-five years of age, Cruzan was involved in an auto accident that left her in a coma and on life support for seven years, despite the fact that she had previously told people she never wanted to be kept alive artificially. It wasn't until 1990 that a judge ruled in the family's favor, ordered life support discontinued, and allowed Cruzan to die peacefully and with dignity. 

In reaction to this case -- and others like it -- President George H. Bush signed into law the Patient Self-Determination Act of 1990. The law required hospitals, nursing homes, and other health care providers to provide information on health care advance planning to adults admitted to their facilities. 

Unfortunately, the law didn't go far enough, because it didn't require that doctors provide the same sort of information to their patients. 

But then the Medicare Prescription Drug, Improvement and Modernization Act, signed into law by President George W. Bush in 2003, authorized "initial preventative physical examinations" by doctors as part of Medicare Part B. Included in those exams were "education, counseling, and referral" services. In 2008, legislators attempted to expand this initial exam to include "end-of-life planning" and information concerning "an individual's ability to prepare an advance directive in the case that an injury or illness causes the individual to be unable to make health care decisions". 

Many doctors resisted the proposed change because legislators failed to include mention of financial reimbursement for what doctors felt would be a time consuming process. President Bush vetoed the proposed amendment, only to have his veto overturned by a combined Democrat/Republican majority. Doctors treating Medicare and Medicaid patients were now required in include "end-of-life planning" in initial exams.

Financial reimbursement to doctors for advance directive education and counseling was proposed in the 2010 Affordable Care Act. Legislators cut the proposal from the bill, though, after politicians eager for publicity falsely called the measure a government creation of "death panels". To date, doctors still do not receive reimbursement for the time spent discussing advance directives with their patients.

Which is why there are still some doctors who fail to inform patients of their legal right to refuse procedures that only extend the dying process.

As one doctor told me, "I don't talk to my patients about that (meaning advance planning). I leave that up to you nurses."

We all understand that talking about end-of-life care isn't easy. Here's a true-life example of how one doctor reacted to the impending death of his patient.

An extremely elderly woman with multiple physical maladies was brought to the ER from a nursing home. Her daughter accompanied her. The patient had been in decline for several weeks and was now only semi-conscious. The daughter wanted her mother to be made comfortable, but did not want any extreme measures taken to prolong her suffering. The ER doctor agreed and suggested the patient be moved to the hospital's hospice unit for her final days. The daughter agreed to the plan, so the nurse caring for the patient called the woman's doctor to inform him of the decision. The attending doctor flew into a rage on the phone. His exact words were, "My patients don't die! Tell the daughter to get a new doctor."

You can imagine how his reply affected the patient's daughter. The poor woman broke into tears, utterly shaken by the doctor's response and now wondering if placing her mom in hospice was the right thing to do. 

In the end, the decision was taken out of the daughter's hands. Her mother died peacefully in the ER before she could be transferred to a room.

Advance planning would have relieved the daughter of much of her heartache. If end-of-life care had been discussed with her mother before she grew too ill to make a decision for herself -- and if a more sympathetic doctor had been the attending in this case -- the process would have been easier for both the patient and her daughter.

Lacking one-on-one discussions with their doctors, people can only rely on those ubiquitous stacks of paper thrust into a patient's -- or family member's -- hands on admittance to a hospital. Among those papers one will find a lawyer-produced pink form pertaining to advance directives, often written in such legalese that the average person has little idea what the darn thing says. I can tell you from experience that, most often, those forms end up in the waste basket. 

I've talked long enough here, but I'll be back another day with more on the differences between Living Wills and Durable Powers of Attorney for Health Care, and which one -- if not both -- you might consider filling out for yourself. Until then, stay safe and in good health! :)