A last note on living

 

 

Photo illustration by Dave Cutler

An ambulance brought 68-year-old Mr. C to the emergency department. He was having difficulty breathing, his blood pressure was low, and his heart was beating fast.

I didn’t need a stethoscope to hear the crackle of fluid in his lungs. Perspiration soaked his hospital gown. We would be intubating him – placing a tube down his throat and into his lungs and connecting him to a machine to help him breathe – within minutes. As the room filled with other nurses, physicians, technicians, a respiratory therapist, and equipment, I checked the chart.

Mr. C did not have a living will or do-not-resuscitate order. He had designated a medical power of attorney, but that person lived out of state and couldn’t be reached. The staff at his nursing home had left messages. They’d also notified two friends on the patient’s emergency contact list.

He was a large man – well over 6 feet tall – who’d once been very muscular, but a series of strokes had left him partially paralyzed and unable to speak. Pressure sores had ulcerated and become infected with an antibiotic-resistant bacteria. He received 26 medications a day, along with liquid nourishment, through a tube in his stomach. Mr. C remained alert, however, and watched the commotion around him. I spoke to him as we worked, and he tracked me with his eyes.

This scenario is not uncommon in U.S. hospitals, yet most of us would hope never to find ourselves or our loved ones in this condition. On a human level, it’s heartbreaking. On a professional level, it presents ethical dilemmas. Technology can support life – and inflict suffering. Medical terminology such as “life-sustaining treatment” appeals to our survival instinct, but how will those measures affect quality of life? Another term, “medical futility,” refers to therapies that are not likely to benefit the patient. That means different things to different people, and deciding whether to stop treatment raises complex personal, family, and religious issues. The best case is one in which everyone involved respects the patient’s autonomy by following his or her wishes.

But what if those wishes aren’t known? We carefully plan our education, investments, and vacations. Yet some of the most essential and sacred declarations we can make – to what degree we want the end of our lives influenced by medical intervention – often remain unexpressed.  

A 2006 Pew Research survey estimated that 29 percent of American adults had a living will. Since 1991, the Patient Self-Determination Act has required all U.S. facilities that receive Medicaid and Medicare to inform patients of their right to refuse treatment, ask them if they have advance directives, and assist those who want to create them. People admitted to a hospital in the United States – whether for a broken wrist or heart attack – are asked who they’d want to make medical decisions on their behalf, and what lifesaving or death-delaying measures they would they accept. For those expecting to recover fully, it can be an alarming set of questions.

These discussions should occur long before a person arrives at a hospital. “If this is something you’ve been thinking about, talk about it with your health care provider,” says Laura Fosler, a palliative care nurse-practitioner at Chicago’s Rush University Medical Center. “Filling out an advance directive should be as routine as going to the dentist. It can always be changed.”

Mrs. K, a 78-year-old in good health, prepared her advance directive with her husband and their attorney more than a decade ago. “My parents didn’t have living wills, nor did they designate a power of attorney,” she says. “It created a lot of tension among my siblings, with different people guessing at our parents’ wishes during an emotionally fraught time. I wish advance directives had been more readily available then.”

Fosler has seen how having conversations ahead of time can reduce stress for patients and their families. “It is infinitely easier for family members to make decisions for a loved one if they’ve had a previous opportunity to discuss their wishes for care,” she says. “Talk about what you would want in case of a severe illness. Would you want CPR if you were very ill and there was little likelihood that it would be beneficial? How would you feel about having to live in a nursing home? Would you accept a prolonged recovery? For example, would it be acceptable to remain on a breathing machine for months?”

In Mr. C’s case, two friends had been granted the legal right to receive information about his condition but not to make decisions. When they arrived in the emergency department, they stood on either side of the bed and held his hands. They’d known him since childhood and remembered how he’d loved to dance. “I don’t need to understand all these machines and tubes,” one of them said. “I just know he wouldn’t want them.” The hospital eventually reached Mr. C’s power of attorney, who wasn’t as certain what he would or wouldn’t want. 

Whether written by a 23-year-old extreme-sports aficionado or an 80-year-old cancer patient, advance directives let adults of any age have a say in the care they’ll receive. Creating a plan for the end of your life may feel less ominous or uncomfortable if you do it when you are healthy. For those already facing a poor prognosis, the discussion may ease the transition to hospice care.

The primary types of advance directive are a living will, medical power of attorney, and do-not-resuscitate order.  

• A living will outlines what life-sustaining medical treatment you want (or don’t want) should you face an incurable or irreversible condition. It speaks for you if you become incapacitated and are seriously or terminally ill. “If you have terminal cancer but are admitted with pneumonia,” Fosler clarifies, “your living will statement that you wouldn’t want to be on a ventilator may not apply, because pneumonia is not a terminal illness.” There are many degrees of medical intervention between the clichéd extremes of “do everything” and “do nothing,” and living wills may be quite specific and extensive.
• A medical, or durable, power of attorney for health care (POA) designates someone to make decisions in the event that you cannot do so yourself. This document applies for any serious illness and is distinct from a power of attorney for financial transactions or other legal issues. If you don’t have a medical POA, decisions usually fall to relatives, such as your spouse, adult children, parents, or adult siblings, or sometimes to a close friend. As Mr. C’s case illustrates, your POA should know and understand your wishes – and be willing to make sure those wishes are carried out, even if he or she doesn’t agree with them.
• A do-not-resuscitate order is a legal declaration, used in the event of cardiac or respiratory arrest, that states that a person does not want CPR. It will not prevent other medical treatment from being provided.

You should review your advance directive periodically. Provide copies to your medical providers, POA, and trusted family members or friends. Do not store the only copy in a safe-deposit box. 

Medical facilities and universities have begun training health care providers to talk to patients about how they wish to approach the end of their life. Part of that training includes explaining that advance directives don’t mean the person will be abandoned, and that the aim of hospice or palliative care is to maximize quality of life through physical, psychological, and spiritual support for patients and their families.

Nurses and loved ones know that holding, washing, feeding, and giving medications to someone who is ill creates a particular intimacy. When the person can’t speak, the caregiver seeks clues. Does she want to be rolled on her side? Might he want his mouth moistened? We begin to recognize signals – this movement means she’s cold; that expression denotes pain. If you must watch someone die, it’s difficult not to wonder what type of care that person would want, and whether a potential request has gone unfulfilled. Did he have time to consider his wishes before losing the capacity to express them? In responding to her death, are we respecting her life? An advance directive is the guide that says, Yes, this is the way I wanted it. Look after me, to the end, like this. For the patient and the caregivers, it can be a most valued and comforting message.

Resources

• The Mayo Clinic offers an overview of advance directives (search for “advance directives”)
• Five Wishes is a popular form of a living will that is legally valid in many states
• The Illinois Department of Public Health provides an excellent summary of considerations related to advance directives (click “A” to find the link for advance directives)