Losing his last three toes to diabetes hit Henry Hull, Washington, hard. He was already living with end-stage kidney failure and blood pressure problems, and had previously lost his other seven toes to diabetes.
What would his life be like without any toes? Would he be able to walk?
When Hull’s primary care doctor referred him to Dr. Michelle Goetz, who specializes in palliative care at Mercy Hospital Washington, he asked what that meant. “Are you telling me this is it?” he said.
Actually, it was just the opposite. Seeing Dr. Goetz has helped Hull improve his outlook on life and feel better about his health conditions and his future.
Hull was unfamiliar with the term palliative care before he began seeing Dr. Goetz six months ago, and even after he went to his first appointment with her, he wasn’t sure what to expect.
Now he explains it this way:
“What palliative care does is try to help you mentally accept your condition,” said Hull, who had been so depressed over his health prior to seeing Dr. Goetz that he had attempted suicide twice.
“She talks with me and lets me tell her what I’m going through. It’s just nice to have someone to talk to.
“Since I’ve been going to see her, I’ve changed my mindset on dialysis,” said Hull. “It’s four hours you have to sit in a chair with two needles in your arm, but I think of it now as my part-time job. I work four hours a day three days a week. That has helped me accept dialysis and the other conditions that I have.”
Dr. Goetz encouraged Hull to find a hobby, so he and his daughter-in-law, Holly, began woodworking together, and that has made all the difference for him.
He recently made a dining room table and two benches for Holly, a shelf for Holly’s mother and a desk for his oldest granddaughter. One of his favorite things to make are inspirational signs.
He made one for Dr. Goetz that reads, “You Were Meant to Be Courageous.”
“We made a bunch for Christmas and now we are going to sell them, just something to keep me busy,” said Hull, noting his woodworking hobby also gives him purpose and motivation to get up each day.
“My family, after I attempted suicide and I was in the behavioral health unit for five days, they had a family intervention and made me promise that I wouldn’t try anything until after Christmas,” said Hull.
“But now I’ve changed my attitude. I was taking life one day at a time, and now I can take it a week at a time. I’m hoping to get up to a month at a time and keep pushing it out. I haven’t had any suicidal thoughts in quite a while.”
He credits talking with Dr. Goetz with helping him change his mindset. So while his other doctors are there to address his immediate medical needs, Dr. Goetz’s role is to really listen to him and hear him.
“What palliative care does is try to get you to understand your illnesses,” said Hull. “With end-stage renal failure, I don’t produce urine anymore. I know this is it. I will be on dialysis the rest of my life. There is no chance my kidneys will magically start working again. It’s just accepting my illness.”
Specialized Care for People With Serious Illnesses
Dr. Goetz, who began her medical career as a hospitalist, took up palliative care in 2015. She knows people have a lot of confusion about what exactly palliative care is.
She describes it as specialized medical care for people with serious illness where the goal is to improve quality of life for both the patient and the family.
She works closely with the critical care doctors who are treating her patients. Their focus is on being experts in those areas of treatment, whether it is heart failure, kidney failure, cancer, Parkinson’s, dementia . . . ; Dr. Goetz’s focus is on healing the overall person.
She does that by spending time with her patients, digging deeper and asking more probing questions about what they really need to live as long and as well as they can.
“To be as whole as they can,” said Dr. Goetz. “That takes time to work through.
“At an oncology appointment, for example, we need the oncologist to know what is the latest in oncology, in chemotherapy, they need to be the expert in that for us.
“In palliative care, I don’t have to see 20 cancer patients, 20 heart failure patients, 20 COPD (chronic obstructive pulmonary disease) patients. I see six, eight or nine patients in my clinic, so I can really sit down with them and their families to evaluate physically what they are going through. Can I add a symptom control as they are going on their journey? Can I address the emotional, mental and spiritual aspect that goes along with having a chronic, serious illness?”
In fact, Dr. Goetz said patients often end up telling her things they didn’t share with their specialists, because she is able to spend more time with them.
It’s not that the critical care doctors don’t want to spend time with patients, but they’re more in-demand, Dr. Goetz explained. Today people with serious illnessses are living longer than ever before, and as a result, the doctors who specialize in those treatments are seeing more patients, which makes their schedules very tight.
Works Closely With Critical Care Doctors
Not all patients who have a serious illness are in need of palliative care. It is for those patients who would benefit from an extra layer of support in addressing the emotional, mental and spiritual aspects that go along with trying to live a good, quality life and quantity of life, said Dr. Goetz.
Her initial visit with a new patient is lengthy, typically an hour and a half to two hours long. The first thing she does is evaluate what the patient understands about his or her body and illnesses. That includes their understanding of the medical jargon that their doctors are using.
Her second order of business is evaluating the patient’s symptoms — pain, nausea, fatigue, shortness of breath . . . Her goal is to improve the management of those symptoms.
Dr. Goetz works closely with her patients’ critical care doctors, keeping them informed and relaying information. One of her patients described her as their “hub,” telling her:
“You are the bridge when I’m struggling to have my oncologist talk with my primary, or my pulmonologist talk with my primary. You are the one who can help disseminate that information, get that information to them.””
Dr. Goetz agreed.
“If you bring to me a problem, I have the time to devote to that problem right then and there to get it where it needs to go,” she said.
“Palliative also is an excellent communication tool for doctors, patients and families. We serve as that bridge between all of them.”
‘It’s a Journey’
Many people unfamiliar with palliative care mistake it as being related to hospice or something for people who are near the end of life. Dr. Goetz said she’s even reluctant to use the words palliative and hospice in the same sentence for fear of linking them in people’s minds.
But the truth is they do not mean the same thing.
“Palliative is meeting you where you are, wherever that is in your journey,” she said. “That includes aggressive treatment, focusing on what’s important to you as you go on that journey.”
That means palliative care is appropriate for people of any age and at any stage of a serious illness, stressed Dr. Goetz, recalling how she had once seen a 21-year-old Type 1 diabetic.
“We can handle her physical symptoms really well, but how does she feel on this journey as she lives with a chronic, progressive illness that affects every organ system?
“She had untreated anxiety, and she needed someone to just acknowledge the difficulty of her diagnosis,” said Dr. Goetz. “She needed someone to hold her hand and say, ‘I see you. I see how difficult this is.’ It meant a lot for her, and her hospitalizations stopped. She has not seen me in the clinic. She just needed that one-time discussion, that validation that this is a chronic illness. This is hard, and it’s not going away.”
Partnering With Addiction Specialists
One serious and progressive illness where palliative care can be helpful is in the treatment of narcotic tolerance, substance use disorder and opioid use disorder.
“There are not enough addiction specialists with which to handle this and none in this area,” said Dr. Goetz, so she has partnered with addiction specialists to assist in their care here.
“That is a role of palliative care, and many times those patients suffer not only with substance use disorder, narcotic tolerance, but they are suffering with heart failure, COPD, kidney disease . . . ,” she said.
Sees Patients Two Days a Week
Most of Dr. Goetz’s patients are referred to her from other doctors, but patients can call her office on their own to request an appointment. She has an office in the Mercy South Doctors Building, 901 Patients First Drive, Suite 3700, where she sees patients on Tuesdays and Wednesdays.
People can contact the office at 636-266-7986 or go to mercy.net/palliative.
Along with Dr. Goetz, Mercy’s palliative care team includes a nurse who also can meet with patients, as well as chaplains.
“Palliative medicine is slow medicine,” said Dr. Goetz. “There should be no reason why we are quickly making changes or doing things this way. We should be evaluating where they are, what do they understand, and the chaplains help do that.”
Hull admits he was skeptical about what Dr. Goetz could do for him when he first began seeing her six months ago, but he’s grateful for the difference she has made in his life and recommends anyone struggling with the emotional and mental side of living with a chronic illness contact her.
“She can help you through it,” he said.
For information on Hull’s inspirational signs, you can contact him by email at firstname.lastname@example.org.