Never Say ‘Die’: Why So Many Doctors Won’t Break Bad News

The majority of patients with serious illness receive news in what researchers call a “suboptimal way.” Could training physicians to deliver bad news help?

JoNel Aleccia, Kaiser Health News

PORTLAND, Ore. — After nearly 40 years as an internist, Dr. Ron Naito knew what the sky-high results of his blood test meant. And it wasn’t good.

But when he turned to his doctors last summer to confirm the dire diagnosis — stage 4 pancreatic cancer — he learned the news in a way no patient should.

The first physician, a specialist Naito had known for 10 years, refused to acknowledge the results of the “off-the-scale” blood test that showed unmistakable signs of advanced cancer. “He simply didn’t want to tell me,” Naito said.

A second specialist performed a tumor biopsy, and then discussed the results with a medical student outside the open door of the exam room where Naito waited.

“They walk by one time and I can hear [the doctor] say ‘5 centimeters,’” said Naito. “Then they walk the other way and I can hear him say, ‘Very bad.’”

Months later, the shock remained fresh.

“I knew what it was,” Naito said last month, his voice thick with emotion. “Once [tumors grow] beyond 3 centimeters, they’re big. It’s a negative sign.”

The botched delivery of his grim diagnosis left Naito determined to share one final lesson with future physicians: Be careful how you tell patients they’re dying.

Since August, when he calculated he had six months to live, Naito has mentored medical students at Oregon Health & Science University and spoken publicly about the need for doctors to improve the way they break bad news.

“Historically, it’s something we’ve never been taught,” said Naito, thin and bald from the effects of repeated rounds of chemotherapy. “Everyone feels uncomfortable doing it. It’s a very difficult thing.”

Robust research shows that doctors are notoriously bad at delivering life-altering news, said Dr. Anthony Back, an oncologist and palliative care expert at the University of Washington in Seattle, who wasn’t surprised that Naito’s diagnosis was poorly handled.

“Dr. Naito was given the news in the way that many people receive it,” said Back, who is a co-founder of VitalTalk, one of several organizations that teach doctors to improve their communication skills. “If the system doesn’t work for him, who’s it going to work for?”

Up to three-quarters of all patients with serious illness receive news in what researchers call a “suboptimal way,” Back estimated.

“’Suboptimal’ is the term that is least offensive to practicing doctors,” he added.

The poor delivery of Naito’s diagnosis reflects common practice in a country where Back estimates that more than 200,000 doctors and other providers could benefit from communication training.

Too often, doctors avoid such conversations entirely, or they speak to patients using medical jargon. They frequently fail to notice that patients aren’t following the conversation or that they’re too overwhelmed with emotion to absorb the information, Back noted in a recent article.

“[Doctors] come in and say, ‘It’s cancer,’ they don’t sit down, they tell you from the doorway, and then they turn around and leave,” he said.

That’s because for many doctors, especially those who treat cancer and other challenging diseases, “death is viewed as a failure,” said Dr. Brad Stuart, a palliative care expert and chief medical officer for the Coalition to Transform Advanced Care, or C-TAC. They’ll often continue to prescribe treatment, even if it’s futile, Stuart said. It’s the difference between curing a disease and healing a person physically, emotionally and spiritually, he added.

“Curing is what it’s all about and healing has been forgotten,” Stuart said.

The result is that dying patients are often ill-informed. A 2016 study found that just 5% of cancer patients accurately understood their prognoses well enough to make informed decisions about their care. Another study found that 80% of patients with metastatic colon cancer thought they could be cured. In reality, chemotherapy can prolong life by weeks or months, and help ease symptoms, but it will not stop the disease.

Without a clear understanding of the disease, a person can’t plan for death, Naito said.

“You can’t go through your spiritual life, you can’t prepare to die,” Naito said. “Sure, you have your [legal] will, but there’s much more to it than that.”

The doctors who treated him had the best intentions, said Naito, who declined to publicly identify them or the clinic where they worked. Reached for verification, clinic officials refused to comment, citing privacy rules.

Indeed, most doctors consider open communication about death vital, research shows. A 2018 telephone survey of physicians found that nearly all thought end-of-life discussions were important — but fewer than a third said they had been trained to have them.

Back, who has been urging better medical communication for two decades, said there’s evidence that skills can be taught — and that doctors can improve. Many doctors bridle at any criticism of their bedside manner, viewing it as something akin to “character assassination,” Back said.

“But these are skills, doctors can acquire them, you can measure what they acquire,” he said.

It’s a little like learning to play basketball, he added. You do layups, you go to practice, you play in games and get feedback — and you get better.

For instance, doctors can learn — and practice — a simple communication model dubbed “Ask-Tell-Ask.” They ask the patient about their understanding of their disease or condition; tell him or her in straightforward, simple language about the bad news or treatment options; then ask if the patient understood what was just said.

Naito shared his experience with medical students in an OHSU course called “Living With Life-Threatening Illness,” which pairs students with ill and dying patients.

“He was able to talk very openly and quite calmly about his own experience,” said Amanda Ashley, associate director of OHSU’s Center for Ethics in Health Care. “He was able to do a lot of teaching about how it might have been different.”

Alyssa Hjelvik, 28, a first-year medical student, wound up spending hours more than required with Naito, learning about what it means to be a doctor — and what it means to die. The experience, she said, was “quite profound.”

“He impressed upon me that it’s so critical to be fully present and genuine,” said Hjelvik, who is considering a career as a cancer specialist. “It’s something he cultivated over several years in practice.”

Naito, who has endured 10 rounds of chemotherapy, recently granted the center $1 million from the foundation formed in his name. He said he hopes that future doctors like Hjelvik — and current colleagues — will use his experience to shape the way they deliver bad news.

“The more people know this, it doesn’t have to be something you dread,” he said. “I think we should remove that from medicine. It can be a really heartfelt, deep experience to tell someone this, to tell another human being.”

Disclaimer: The viewpoint expressed in this article is the opinion of the author and is not necessarily the viewpoint of the owners or employees at Healthcare Staffing Innovations, LLC.

Kim’s Blog: “See You Down The Road”

How do you ask patients about end-of-life wishes? Kimberly Spering, MSN, FNP-BC discusses her experience with having this crucial conversation.

by Kimberly Spering, MSN, FNP-BC

How do you ask patients about end-of-life wishes? I think this is a difficult question… with difficult answers. Truly, end-of-life discussions are fraught with angst, sometimes anger, hopelessness… but sometimes, they can lead to hope, and a willingness to discuss goals of care.

“Crucial conversations.” These are the questions that providers ask, trying to elicit patients’ goals of care, fears or concerns, hopes and wishes, and wants for their end-of-life. These are oh-so-important conversations with people… yet, so few providers really ASK the questions… or listen to the answers. I fully understand this. In the busyness of a day, with metrics to meet, tons of patients to see, conversations that take time are… difficult. And uncomfortable. However, they are still important.

For me, it’s been an interesting few days, to say the least. I held hospice discussions with many patients — two signed on in the past few days, and one most likely will do so.

The first patient has fought two different cancers over the past two years. When I met her 10 months ago, she expressed a desire to pursue treatment – so long as the side effects weren’t worse than the disease itself. At that time, and in the months following that visit, I would routinely question what her wishes were. Until the visit this week, nothing changed.

Fast forward to seeing her this week. She was beyond emaciated. More weight loss… but yet, she had large amounts of peripheral edema due to her albumin being super-low. Her oncologist prescribed Lasix… which worked briefly, then had no effect. She had almost every side effect to her chemotherapy that could happen. Yes, she had medications to off-set side effects, but those meds had side effects as well.

In short, she was suffering greatly.

I noted her worsening cachexia, dark circles under her eyes, unsteadiness on her feet. “Tell me how you are doing,” I asked, guessing full-well that I knew what horrors she experienced.

“I’m DONE. I’m FINISHED fighting this cancer. I stopped my treatment one week ago,” having stopped the two medications designed to fight it.

She was resolute. We discussed her side effects, her quality of life (which was non-existent at this point), and her goals of care.

“I don’t want to die at home. He (her husband) can’t take care of me.” We discussed that inpatient hospice was for patients with uncontrollable symptoms or a limited (2-week) life expectancy, or for management of uncontrolled symptoms. It is NOT, however, for patients with a longer time to death. She wasn’t willing to consider an assisted living or skilled nursing facility. I discussed what home hospice would entail for her, with as much support as needed.

Ultimately, I connected with hospice and had services initiated.

Another patient has severe aortic stenosis, diastolic CHF, CAD, CKD 4, and a plethora of other co-morbidities. I met her several years ago, and surprisingly, she has done well for the past several years… until four months ago. She has had increasing chest pain, worsening CKD, esophageal dysmotility, and a bunch of other symptoms.

During my last visit, I floated the idea of hospice to her daughter and son-in-law, given the progressive decline I’d observed. We talked at length, but held off. Today, her daughter wanted to discuss hospice again. The patient had been to the ED & hospice was discussed with another family member.

After a robust, engaging conversation with her daughter today, I approached the patient.

We discussed the course of her disease processes over the past few years, particularly the past few months. Initially, she felt she should return to the hospital for urgent treatment. “Doesn’t everyone go to the hospital if in trouble?” she asked.

Well… no, I explained, people don’t HAVE to go. We discussed her goals of care and desires for comfort over treatment. Her AS and CKD really limited her treatment options. Diuretic increases would worsen her renal function. BP modifications could decrease her cardiac output and worsen her AS.

So… in the realm of “treat everything,” what does one do?

One option is to offer hospice as an additional option for 24/7 support. I described their services, the concerns I had that her going back to the hospital would offer limited treatment options, and their desires for extra support and aggressive symptom management.

We had a lively discussion of what that would entail. Ultimately, the patient and her family will discuss the pros/cons of hospice, and let me know if they want to start those services.

My last patient was a WWII veteran, married for 72 years, and a wonderful story-teller. Someone with ESRD, combined CHF, atrial fibrillation, and a plethora of other health problems. I spent a lot of time listening to his war stories… which over time, included his PTSD (called “shell-shock” in those days). His wife told me privately he had never shared any of his experiences with her. After his retirement, he spent years being an auctioneer… until his eyesight failed, rendering him unable to read the bids.

Over the years that I saw him, I loved listening to his stories: stories about the war, stories about his family, heart-break when family members died unexpectedly, worries about his wife’s health issues (only spoken when we were alone). We discussed his progressive disease, including CHF, ESRD, atrial fibrillation, etc. I watched, as time took its toll on this soldier.

Today, I came to his home, only to find him bed-bound, on oxygen, and extremely weak. “What happened?” I exclaimed. He was discharged home from the hospital a few weeks previously, but not in this state.

I discovered that his cardiologist (not part of our hospital network) had ordered oxygen last week. I had no notes… no idea of what had transpired. His wife was of limited help, due to her own memory issues.

Quickly, I called my staff to get records ASAP. I did an immediate assessment – nothing unstable, but still… his respiratory rate was elevated. He had pain in certain areas. He was only voiding 1–2 times daily (this… for someone with prior nocturia 3 times nightly, and voiding every 2 hours while awake). He wasn’t eating or drinking.

In my assessment, he was starting the process of actively dying.

We discussed his disease progression, his declining status, his goals of care, his fears and hopes. His biggest worry: “I want to make sure that she (his wife) is alright.” He was worried about the dying process, but acknowledged that it was his time. Meanwhile, his wife, teary-eyed, told me that their daughter was of limited support, and that she could not rely on her. She only had a nephew and nieces – both of whom support was limited.

We discussed his situation and symptoms, symptom management, spiritual concerns, and we did a life review. For those unaware of the latter, it is a discussion of all of the things that a person has accomplished or succeeded at over the course of his/her life. It is profoundly moving, and often facilitates a patient’s acceptance of their end-of-life status. I reminded him of the stories that he shared over the past year or so. We chucked at some of his jokes. I laid on their bed, as he was extremely HOH, talking about these stories.

At the end, I asked him what he wanted most. His biggest concern was that his wife would be OK, able to function on her own. She teared up, but told him she would be OK.

I kissed him on his forehead and gave him a hug, telling him that I wanted him to rest. Hospice would be coming shortly, and he needed to regain some energy.

He thank me for all of my care, then told me, “See you down the road.”

I choked up, swallowing back tears. “I love that. I’m going to remember that and use it,” I managed to get out. Then, as I smiled at and hugged him, I left the room, tears swimming in my eyes.

His wife followed me. I spent another 30 minutes talking to her, trying to help her cope with the upcoming loss of someone so dear… trying to help her realize that she was not alone. Trying to help her elicit hospice support when it started.

“Will you come to see me? I have no one…” she stated.

You bet I will. Patients/families like this are few and far between. I will try to see all of the people that I’ve followed… even if I can’t be their NP. Sometimes, just being a friendly face helps.

I just LOVE being able to connect with people, sharing their stories over time. But it is so incredibly hard to direct people to the realization that they are at the end of their life. That disease-directed therapy is not working. That hospice-supportive care is the way to go to support their end-of-life needs.

In my palliative work, I am blessed in having the time to discuss these issues over time with patients and families. I am blessed to have the medical foresight to help predict their course of illness.

Death has its own timetable. It waits for no one. It is the one INEVITABLE outcome for all of us — the timing or reason unknown for most. I can estimate when the end will occur, but a higher being only knows when that occurs (God for some, HaShem for others, Allah for some, etc.).

I’m going to shout out to my hospice and palliative medicine colleagues here. They have helped initiate needed services. They work tirelessly in the trenches for patient care. They support us when needed.

Ultimately, patients and families can be supported, even when death is imminent… or prolonged.

What does a peaceful death look like to patients? Or you? Are health care providers and families willing to ask the hard questions: their goals of care, fears or concerns, wishes/bucket list items? These are tough conversations, but crucial ones.

Let’s honor patients’ wishes, by supporting them, asking the tough questions. Asking their goals and wishes, fears and concerns, what is most important to them, what is crucial to living their lives, and also, who is their support.

And a hearty, “see you down the road” as well.

Kim Spering has been a nurse for over 25 years and worked as an NP over the past 15 years in Family Medicine, Women’s Health, Internal Medicine, and now Palliative Medicine. She serves as an editorial board member of Clinician 1 and submit blogs to the website, with a goal of highlighting both the clinician and patient experience in health care.

Disclaimer: The viewpoint expressed in this article is the opinion of the author and is not necessarily the viewpoint of the owners or employees at Healthcare Staffing Innovations, LLC.

Hospice or Palliative Care?

NPs can guide patients to optimize care and support at the end of life.

from The Nurse Practitioner

NPs care for patients with chronic diseases such as heart failure, chronic obstructive pulmonary disease, cancer, and dementia. As the disease progresses or patients age, disease-related symptoms may become increasingly burdensome, and these patients may benefit from hospice or palliative care. NPs can guide individuals in this process to optimize care and support at the end of life.

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Disclaimer: The viewpoint expressed in this article is the opinion of the author and is not necessarily the viewpoint of the owners or employees at Healthcare Staffing Innovations, LLC.