By Ken Russell
January 24, 2013
When people are faced with serious injury, a terminal illness or any condition requiring heroic measures to stay alive, such as feeding tubes or intubation, sometimes patients, or their families, choose the cessation, or avoidance, of hospital care.
For over 30 years, Bettina Desrochers has given end-of-life care and has attended hundreds of peaceful deaths of old and terminally ill patients. For seven years, she ran Elder House, a small hospice and respite care home out of her house.
These days she travels the country speaking on end-of-life issues and works as an end-of-life coach. Desrochers talked about the importance of deciding, before you get sick, what kind of treatment you want and of finding an alternative to dying in the hospital. Otherwise, you, or a loved one, can risk getting caught in the health care system, receiving unwanted procedures or being in an environment not of your choosing.
“Once you get stuck in the medical field, it’s really hard to get out,” said Desrochers. “It can be a real nightmare. There’s health care and then there’s dying. Sometimes dying has nothing to do with doctors and nothing to do with nurses. Your life is coming to an end. Just being able to go somewhere and die, just being allowed to die, not accepting medical care, making sure the folks around you know what you want and what you don’t want, and having good, honest conversations, long before you even think about being sick. Taking a look at your environment, taking a look at yourself—sometimes that’s the best thing.”
Cindy Bruzzeze, executive director of the Vermont Ethics Network, a nonprofit organization that promotes better understanding of ethical issues and choices in health care, spoke of the need to plan ahead, to decide what medical treatment we want and when to cease it in these difficult situations. She stressed the importance of writing up an advance directive, which can provide a roadmap for health care providers.
This is especially important when a patient is too sick to provide direction. The Vermont Advance Directive combines and improves upon the earlier forms, such as a living will or medical durable power of attorney, and is meant to be more enforceable and useful for helping to direct decision making during end-of-life situations. Bruzzeze discussed some of the considerations regarding health care near the end of life and in other situations involving serious illness:
“Certainly our technology and our medical capabilities are always improving. We can keep people going, probably longer than they would ever imagine they would want to keep going,” said Bruzzeze. “The medical system is incredibly complex, and I don’t think that everyone fully understands what it means when they say, ‘I want everything.’ If they haven’t thought about it in advance at all, and then they’re in a critical health crisis and health care providers say, ‘So, what do you want to do?,’ and the family says, ‘Well, do everything.’ I don’t know if everybody really knows what ‘everything’ really looks like, what that really means, and that everything isn’t really what they had in mind.”
Like Desrochers, Bruzzeze emphasizes the need for honest conversations ahead of time.
“Often I think it boils down to the fact that every treatment has benefits and burdens, and the individual has to try to figure out what kind of burden they are willing to endure for what kind of benefit,” said Bruzzeze. “At some point, they’re willing to endure quite a bit of burden because the benefit, the payoff, is really good, but at some point, this whole equation kind of flips; the burden begins to outweigh the benefits. So how [do] we [have] these conversations with patients, not when they’re already at the very end of life, but sooner in the process, when they’re beginning to face illnesses that will shorten their life?”
Advance directives, said Bruzzeze, are an opportunity for individuals to share what their goals and values are when it comes to their health care in different situations. She noted that people generally fall in three categories when it come to treating serious illnesses. At one end of the spectrum are generally young people who want whatever it takes to help them recover; at the other are often older people who’ve lived a long life, don’t want heroic measures and may feel it’s their time to die. But in the middle is a gray area.
“I see a whole group of people who think, ‘Well, it just depends, depends on what technology’s available at the time, what it’ll take to have my life be better,’” said Bruzzeze.
In deciding how much care you want to receive, Bruzzeze says it helps to think about possible situations and get specific, to think about what makes life valuable and how you want to live the last period of your life.
“If you knew your time were short, would you want all of these things anyway, just to extend it? Even if it meant being unconscious in the ICU, would you want that?” asked Bruzzeze. “I can only speak anecdotally, but I would say that in the majority of the workshops that I do, about 100 percent say, ‘If my situation were one I could not recover from, I would not want just to exist, just to depend on machines.’”
For family members and health care providers, it’s important to know what the patient wants. “It’s not a matter of the medical costs,” said Bruzzeze. “It’s: Did we know whether this is what those people wanted? Are we using those resources even though they didn’t even want it? How do we respect those patients’ preferences? How do we give good patient-centered care that respects their goals and values as they move from being fairly healthy, to being sick enough to die, to being terminally ill? People are all along that continuum, and how do we match the appropriate medical care with their goals and values?”