Living With Dying articles
By Leah Carey
Jan. 17, 2017
Speak with anyone in the Northeast Kingdom about end-of-life care and you’re likely to hear two names: Dr. Mary Ready and Dr. Joyce Dobbertin.
The two women are board certified in Palliative Care and form the backbone of palliative care services in the NEK.
They are also good friends and primary supports for each other, wanting to be interviewed together and frequently finishing each other’s thoughts.
As representatives of the palliative care and hospice community in this area, they spoke with us about the differentiation between hospice and palliative care, as well as what to do if your loved one is not receiving the care they need.
Palliative care vs. hospice
Many people have the mistaken impression that palliative care and hospice are the same thing.
“Palliative care is a type of medicine that helps to make your life better when you have a life-limiting disease,” explained Dobbertin. “By life-limiting, it could be days, it could be decades. So it’s not going to be something that is just reserved for people who are pre-hospice. This is for people whose lives are going to be probably shortened because of the disease that they have.”
Some conditions that would be considered “life-limiting” but not necessarily “terminal” are emphysema, chronic obstructive pulmonary disease (COPD), congestive heart failure, and dementia.
Going on palliative care allows the patient to continue any and all aggressive treatments they might choose, while also getting extra support to have the highest quality of life possible.
“Sometimes the highest quality is aggressive care, and other times it’s a baby monitor so they can go out and work in the garden while their loved one is in the house,” Dobbertin said. “It’s amazing what improves quality of life.”
Hospice, on the other hand, is specifically for people with a terminal condition that is likely to end their life within the next six months. There isn’t a six-month time limit on hospice services – there are people who remain on hospice for a year or more – but that is the marker that allows doctors to determine whether a patient is eligible for hospice.
Once on hospice, curative treatment is ended in favor of comfort care.
“You need to be stopping the expensive aggressive treatment,” Ready said. “We know a lot of cancer treatments cost $35,000 a month. There’s a lot of treatment that people are currently receiving that cost more than $100,000 a year in their last year of life.”
In fact, there are studies showing that people on hospice live longer and have a higher quality of life than those who continue aggressive treatment.
“If hospice, as it’s done in this community, were a chemotherapy treatment, it would be right on the top of the list,” said Ready. “People live longer a lot of the time when they’re on hospice. But not all hospices are the same … the deviation from the norm can be really awful for people.”
How to advocate when things aren’t going well
Which leads to the question: What should a family do when their hospice experience is at the low end of the deviation from the norm?
While the two doctors appear to work seamlessly together, they have very different temperaments. That showed particularly in their response to this question.
Ready argued the point of view of the patient’s family and what they’re trying to accomplish; Dobbertin argued the point of view of the doctor who may not take kindly to criticism.
“Say, ‘You’re not listening!’” said Ready forcefully. She has had multiple experiences herself of having to be loud and persistent with medical providers prior to becoming a doctor.
Dobbertin countered that this could heighten an already challenging situation.
“As health professionals, we get kind of prickly when people tell us that we’re not listening,” she said.
“But the person is dying! They can say whatever the hell they want. It’s our job [as doctors] to be the grown ups,” Ready said. “It seems like a lot to expect the family to be on their best behavior and use the right words for the doctor to hear them. I think it’s the doctor’s job to listen.”
“I think you need to say it in a less judgmental way,” Dobbertin said. “What is the end that you’re trying to achieve? If you go at it too strong with a person who already didn’t listen, are you going to help them to listen more? … I would advise a person to put it very much in ‘I’ statements, instead of ‘you’ statements.”
While doctors who focus on curative treatments might see death as a failure, for Ready and Dobbertin it’s anything but.
“What I say to people when death happens is, ‘You are going to be sad that your mother is not alive. You will not regret her death, but you will be sad that she’s not alive.’ That’s what happens,” said Dobbertin.”
They often see family members who are afraid to give their loved ones morphine, for fear of ending their lives. “I just keep saying to them, ‘If it’s done out of love, you are doing the right thing,” Dobbertin said. “You don’t ever have to worry, and I’ll back you up.”
“It’s going to happen to all of us,” agreed Ready.
And, she said, there are people who are going to die not at peace with their lives or the people around them.
“How do you make sense of that?” she asked. “Don’t allow people to be abandoned. Don’t allow people to be isolated. You stay with them even if they’re angry with you. You just are present. That’s a lot of our work.”
“Sometimes the worst deaths, they teach you the most,” said Dobbertin. “But they just feel like crap inside.”
“And then we have to help each other,” nodded Ready.
My mother’s death was not, in my mind, a “good” death.
That was a term I’d heard often enough for it to be lodged in my brain, but I wasn’t entirely sure what it meant. I just knew that, whatever it meant, my mom didn’t have it.
In her last week of life, she was emotionally agitated and physically distressed. In the final day of her life, I was unable to give her the care she needed and I felt unsupported by the systems that were supposed to help us. In the final hours of her life she got the care she needed, but she appeared to be struggling mightily right up until her last breath.
Those memories haunted me. My mother was my best friend and I wanted nothing more than to give her the best experience she could have right up until her last moment on this earth.
When I first spoke about this newspaper series with people, I talked about it in terms of offering resources so readers could provide their loved ones with a “good” death.
People questioned me: But what is a “good” death?
I’ve spent countless hours mulling that question and couldn’t come to a satisfactory answer.
Would I think she’d had a “good” death if her moment of passing had been more peaceful? Probably not, because the days leading up to it had been so fraught.
Would I think she’d had a “good” death if we’d had more support in her final days and weeks? Possibly, but that wasn’t actually her death, I thought, so surely that doesn’t count.
I stopped using the phrase because I couldn’t defend it, even to myself.
In speaking with Drs. Ready and Dobbertin, a new-to-me concept entered the conversation.
“No regrets,” Dobbertin said. “You want no regrets of what you’ve done to take care of your loved one.”
This, I think, is key. My perception of my mother’s death experience has been colored by my regrets: regrets of not bringing in more compatible care providers; regrets of not being more knowledgeable about her condition so I could see the approaching difficulties; regrets of not being strong enough to be the last face she looked into as she died.
I’m realizing that all of this has to do with my experience of my mother’s death, not her experience of it. I am the only one holding on to these judgments about her death – Mom isn’t holding judgments because she’s no longer here. And I trust that if she is still out there somewhere looking down over me, she knows that I did the best I could with what I knew in the moment.
So now, thanks to the good doctors, I return to that (perhaps clichéd, but no less relevant) phrase: this series is meant to help you provide your loved ones with a good death, a death that you can look back on with no regrets.