The Vault

Can Good Care Produce Bad Health?

For those of you who haven’t yet heard, I have recently been diagnosed with Stage IV inflammatory breast cancer. This rare form of breast cancer is known for its rapid spread. True to form, it has metastasized to my spine. This means my time is limited. As a nurse, I knew it from the moment I saw a reddened spot on my breast and recognized it for what it was.

My recent journey through the health care system has been eye-opening. In only a few months, I have witnessed the remarkable capabilities and the stunning shortcomings of our health care system firsthand. I am writing here because in the time I have left, I hope my story and my journey can help illustrate why some of the reforms that my colleagues and I at the John A. Hartford Foundation, as well as many others, have championed are so important.

At the cancer’s earliest appearance, I consulted with a well-regarded oncologist in New York. After the tests were done she regretfully informed me that my disease was not curable. Because my cancer is hormone-receptor-positive, she recommended an evidence-based course of medications aimed at slowing the progression of the disease. Before I committed to this course of care, I wanted to get a second opinion. I secured an appointment with the pre-eminent researcher/clinician in the field of inflammatory breast cancer, at a top medical institution in Philadelphia.

The building was beautiful, the staff attentive. They even assigned a nurse, whom they assured would follow me throughout my course of care. I had no doubt that the care would be top-notch.

Everything changed when my mother and I sat down with the physician. He never asked about my goals for care. He recommended an aggressive approach of chemotherapy, radiation, mastectomy, and more aggressive chemotherapy. My doctor back in New York had said this was the standard, evidence-based protocol for patients in Stage IIIB, whose cancer had only spread locally. But since I am in Stage IV she said I wouldn’t get the benefit of this aggressive, curative approach.

“All of my patients use this protocol,” he said.

I was shocked. “Does this mean I could get better?” I asked.

“No, this is not a cure.” he answered. “But if you respond to the treatment, you might live longer, although there are no guarantees.”

My goals are to maximize my quality of life so I can live, work, and enjoy my family with the least pain and the most function. Would I undergo a year or more of grueling, debilitating treatment only to live with spinal fractures if the cancer progressed?  Would the treatment strip me of the quality of life I enjoy now?  I wouldn’t be cured by the treatment. Would I get the possibility of quantity and no quality?

I pressed him. “Why do the mastectomy?” I asked, puzzled. “The cancer has already spread to my spine. You can’t remove it.”

His brow furrowed. “Well, you don’t want to look at the cancer, do you?”

He made it sound like cosmetic surgery. Considering that a total mastectomy includes months of pain and rehabilitation, I thought that worrying about the view was secondary. Right now, I feel fine. I can work. I am pain free. Did I want to trade that for a slim chance of a little extra time (no guarantees, of course)? Would they be years of living, or years of suffering?

“But what about the side effects of radiation?” I asked. “I’ve heard they are terrible.”

He frowned and seemed annoyed by my questions. “My patients don’t complain to me about it,” he replied.

Inwardly, I shook my head. Of course his patients never complained to him. Most of them were probably unaware that other, less aggressive treatments were viable options for patients with this stage of disease. To me, there were real drawbacks. Undergo aggressive therapy that might buy me a longer life…at what cost? I might never recover my health for the limited period of time I might have following the aggressive treatment. This doctor, top in his field, was reflecting the bias of our medical system towards focusing only on survival. He was focused only on quantity and forgot about quality. The patient’s goals and desires, hopes and fears, were not part of the equation. He was practicing one-size-fits-all medicine that was not going to be right for me, even though scientific studies showed it was statistically more likely to lengthen life. His lack of concern for my focus on quality versus quantity of life reminded me of how so many older Americans are treated at the end of life, shuttled in and out of hospitals and hooked up to countless machines to keep them alive when all they want is to manage pain and symptoms and to spend their final days at home, with their loved ones.

Based on a perverse set of metrics, the Philadelphia oncologist was offering technically the “best” care America had to offer. Yet this good care was not best for me. It wouldn’t give me health. Instead, it might take away what health I had. It doesn’t matter if care is cutting-edge and technologically advanced; if it doesn’t take the patient’s goals into account, it may not be worth doing.

I returned to my original oncologist. I was determined not only to choose treatment that would maximize the healthy time I had remaining, but also to use that time to call on our health care institutions and professionals to make a real commitment to listening to their patients. In the health policy field, we call this patient-centered care. As a nurse and a senior program officer at a health care foundation, I understood my disease and my health care options well enough to make an informed decision about my treatment.

What about the millions of older Americans facing a terminal illness or chronic disease?  How can they possibly stand up to the juggernaut of our health system and say, “No. I want care that focuses on my goals, care that is centered on me.”  We need to make it easier for everyone to obtain care that fits their health care goals. How can we change the system and the measurement of quality to place the patient at the center? I call on everyone involved in health care practice and reform efforts to give serious thought about how we can reorient our health care system toward patient-centered care.

Amy Berman, BS, RN, is Program Officer of the John A. Hartford Foundation. She writes at health AGEnda.

Livongo’s Post Ad Banner 728*90

48
Leave a Reply

43 Comment threads
5 Thread replies
0 Followers
 
Most reacted comment
Hottest comment thread
37 Comment authors
BarryJoel Hassman, MDPatientChoiceAdvocatehospital marketingKillroy71 Recent comment authors
newest oldest most voted
Barry
Guest
Barry

There are so many competing interests in healthcare/medical care and so many misunderstandings in the conversations about it. It is really disappointing. There is a huge gulf as well between those who deliver care and those who receive, though there are many books/other pieces by those who experience both sides, like the original author of this piece, that provide some perspective.

I enjoyed the book, Mountains Beyond Mountains, about a Harvard trained and employed MD that might offer some perspective on delivering healthcare.

Killroy71
Guest
Killroy71

DeterminedMD just keeps making Amy’s case, and his handle says it all.

It’s isn’t just one doctor, doctor, it’s a whole lot of them who act as if “engaged patients” are a problem. Though it’s hard to see how a relationship can form without engagement on both sides. Me, I’d be happy if I got the sense my doctor actually read the chart before walking through the door.

Amy, thank you for sharing your story, and blessing upon you.

CJ
Guest
CJ

I just completed over 50 in-depth interviews with “thought leaders” in oncology. I can’t go into too much detail about the project – a qualitative research project seeking perspectives and observations about the drivers and barriers to cost-effective, patient-centered care. I’ve been doing health research for a long time and I have heard many things that disturbed me, but nothing has disturbed me like what I learned in these interviews. This essay hits the nail on the head. It’s time to start talking about QOL.

accupuncture marina del rey
Guest

Good post you gather lot of information on your post i really enjoyed to read your post thanks for your hole research work and share with us.

Paula
Guest

There is a huge difference eeewbtn hospitals and care homes and that is one of accountability. The article completely misses the point that should a care home be neglectful or found to be in any way abusive then immediate sanctions are put in place to prevent any further admissions or even close the home down. This is quite simply not the case with hospitals that can be institutionally abusive to the elderly with impunity as there are no repercussions for the hospital or the staff. I am speaking as the son of a lady that was very well cared for… Read more »

Cathy White
Guest

Amy, Good luck with your courageous struggle. After spending 20 years working in health care I am not surprised at Amy’s experience with physicians. She’s an educated health care consumer so imagine what the general public goes through. I too advocate for better quality health care — which is why I wrote a short book (4000 words) of practical advice that I have successfully used to get better health care for my family and in winning billing and insurance battles (among other topics).

Inspi Tof
Guest
Inspi Tof

One thing that might be helpful in this conversation is to remember that doctors are insecure too. They are insecure in part because they have chosen to put themselves between a person and his suffering. Additionally they are insecure because they are human — who doesn’t want to do a good job? Who doesn’t want to be recognized as successful? So this is part of what the physician brings to his or her relationship with the patient. Now what medical care has become in today’s world, particularly in the United States, is the delivery of highly complex procedures as responses… Read more »

Amy Berman
Guest

Dear Inspi Tof,

I enjoyed reading your response. It reminded me of a quote from William Osler, the father of modern medicine. He said, “The good physician treats the disease; the great physician treats the patient who has the disease.”

All best and thanks, Amy

Amy Berman
Guest

Dear Senator Stevenson,

Thank you for your life long commitment to this country. I am deeply honored by your kind words. And on behalf of people struggling with serious illness, thank you for your advocacy on behalf of patient-centered care.

Warmly,
Amy

Adlai Stevenson
Guest

Amy- First off I want to say how moved I am that you wrote this. It took a lot of courage and faith to be able to post this. I, too, believe in the notion of patient-centered health care. It is important for individuals to understand all of their options, and to be able to make an informed decision based on what they have learned. In defense of the second opinion doctor, I’m sure he just wanted you to fight as hard as you can to stay alive. I’m sure he had the best of intentions. But aside from that,… Read more »

Jack Brown
Guest
Jack Brown

As a health insurance agent for over 35 years.I have wondered a lot about care that I felt was more of a painful way life than helpful to the person getting the care.My mother and I talked at lenght about end of life.I new what she wanted and I followed right up for her.It was hard but seeing her in a painful way of life was much worse.It was her wish and I honored it.I have clients that can not make that decison they do not want to be the one that tells the doctor to stop care.I have written… Read more »

Amy Berman
Guest

LifeCoachRN, points out that hospice is vastly under-utilized. There are misconceptions in the consumer and clinical worlds about hospice care. They should know that pain and symptom management are a priority and can include oxygen and other supports. The level of expertise focused on the physical and psychosocial needs of the patient and family beg the question–why is this chosen so close to the end when the care would be beneficial far sooner? Margo, my thoughts go out to you in support of your patient advocacy. A dear friend and colleague of mine works for a health care foundation that… Read more »

Margo
Guest

Amy, Thank you for your courage ad desire to help others at this time. I am a cancer survivor and have survived 3 life-threatening medical errors. I am trying to teach people how to educate themselves and better advocate for themself or a loved one. I am currently going through tests to determine if I have breast cancer. Thank God it will be earlier stage if it is there, but during the process I got new insights into “sloppy” medicine, have written letters and talked with doctors involved to try to get them to reassess the princples and guidelines they… Read more »

Jonathan
Guest
Jonathan

Some recent empirical findings on the topic of physician authority. People report more, not less, trust in physician opinions than they did eight years ago.

LifeCoachRN
Guest
LifeCoachRN

First let me say Amy is that my prayers are with you and your family in this difficult time. Secondly I admire your courage to look at and speak out in this situation. My heart is moved with compassion for you as it is when I see so many patients in the same position. For the most part we do not practice patient focused care because we’re not listening to them. I worked for Hospice where this scenario was repeated over and over again. When a person is given a devastating diagnosis they look to the healthcare professional (usually MD)… Read more »

Flat Stanley
Guest
Flat Stanley

Fair Warning: This post is a off-topic:
DeterminedMD sure does get around. I’ve met him (and his female version) several times over the years. How do I recognize this person in all his/her many forms? By the nearly belligerent use of power, bearing and being when interacting with someone who dares speak up for him or herself.
Don’t they get it? No, they don’t. They are just people (shhh…let’s not hurt anyone’s feelings).

hospital marketing
Guest

Very inspiring article. I admire you for sharing us your story.

“The good physician treats the disease; the great physician treats the patient who has the disease.”

This is just a matter of good physician-patient relationship. An understanding. The physician gives his/her patient options and make the patient understand about their effects and the patient can suggest and, of course, choose.

Thank you for this article.

hospital marketing

Sarah
Guest

Wow, that is just crazy. I guess that is why everyone should get a diagnosis by more than one doctor to see which doctor meets their goals.
However, I can also see that a doctor is geared toward either healing or extending. That is their purpose. And sometimes, adhering to these standards allow the cure to happen even if it is unlikely or not likely at all.
Nonetheless, very interesting read and I appreciate you posting this.