End of Life Calls for Courage to Have Difficult Discussions
Doctors and families need to reach mutual agreements
No one wants to talk about end of life. Yet, it’s a discussion everyone must have.
For doctors, talking about terminal healthcare is part of their job descriptions. That doesn’t make the conversation pills easier to swallow.
“So many difficult decisions are made, and there are many issues involved in end-of-life healthcare situations,” said Dr. Narciso Tapia, a medical educator and blogger.
“This could make end-of-life healthcare particularly challenging for families and doctors or healthcare professionals,” he said.
End-of-life care denotes support and medical care given during the time surrounding death. It might also include care for those with a terminal condition considered incurable, progressive or advanced.
“Many are hesitant to talk about dying,” Tapia said. “Although everyone knows death eventually comes, not many can plan for their wishes and preferences when one is near the end of life.”
Put off inevitable
Families are reluctant to make decisions in advance, preferring not to think of the inevitable. Then when the time comes, they are too distraught to decide on what is best for survivors to cope and continue.
“With no advanced decisions or directives, family members — including the spouse of the patient — often have disagreements that even may result in legal action,” Tapia said. “For some, making end-of-life decisions are complicated by financial constraints of the patient.”
Dr. Iris Thiele Isip Tan, an endocrinologist and blogger, has had similar experiences.
“I’ve had relatives of the patient explain — with much guilt — that they have to let go because of lack of funds,” she said.
There are also indelicate issues to address.
“When to pull the plug?” Yinka Vidal asked. “What to do with the body if they have no money for burial? It’s getting family members to agree on what to do.”
Vidal is a healthcare professional and lecturer who has seen many similar cases.
“From a clinical aspect, pain control is not so much an issue for a person in coma with no neurological signs or reflex,” he said. “In some situations, perhaps, but not in most cases when the body is dying.”
Honest disagreements
Heartfelt family conflicts frequently occur.
“Some of the relatives may favor further intervention while some are ready to let go,” Tan said.
Healthcare professionals must balance what they know from seeing end of life approach many times over. In each instance, they must summon compassion to console the patient and family members.
The providers can offer hope but can’t guarantee results nor dismiss pleadings from the sorrowful.
Dr. Jaifred F. “Jim” Lopez does research in health policy and management and teaches community medicine and research methods.
“In my short experience, two things: breaking the news, and helping them think in between their intense emotions,” he said. “These are particularly difficult if one has personal experiences related to this.
“I remember techniques were taught to us through case studies and some film appreciation,” Lopez said.
That distinguishes the novices from veterans.
“For young physicians, it’s a problem compared to experienced physicians who have seen life and death many times,” Vidal said. “Confronting death is a very difficult issue for young healthcare workers.
“The issue is preparation,” he said. “I have a friend in a coma right now. I already prepared family members what to expect. He’s a good friend to the family. So, I must prepare all my adult children as well. We often embrace new birth and find death very difficult.”
Doctors affected
Then there’s the providers’ trauma.
“Dealing with emotional response of a healthcare worker is another issue,” Vidal said. “Early in my healthcare profession, I found death difficult to deal with. Later, after seeing so many, death becomes easier to deal with.”
Added to ordeals are tasks such as asking permission from family members to harvest organs for transplants. This affects physicians even if they are reluctant to admit it.
“Earlier, I had my sleepless nights and many hidden tears after patients died,” Vidal said. “Recently, I learned an MD friend died last year of cancer. Death is part of life.”
How to face death should be part of healthcare training, but Tapia is not certain.
“I wonder if end of life is part of the topics or objectives in the medical school curriculum,” he said. “Perhaps in bioethics.
“End of life often requires patients or relatives to decide on hard choices,” Tapia said. “Framing issues and choices are often a struggle for MDs.”
Such instruction might occur in less formal settings.
“Often, we’re taught by our well-meaning mentors to step inside the shoes of patients and relatives with end-of-life decisions to make,” Tapia said. “That’s easier said for an MD if he or she has 30 end-of-life patients per month.”
Caught in between
When relatives are hard pressed to make decisions, doctors can be trapped in the middle.
“We tell relatives the options, and no one is able to decide,” Tan said. “Each is afraid of being blamed. Then they ask me as the doctor to decide.”
She also said end of life is a medical conflict of interest.
“It was discussed at our internists’ convention: Do you think MDs have a hard time because we are trained to save or prolong life?” Tan said. “Death is seen as failure of duty.”
Longtime patient associations have also helped Tan when they and families were not prepared.
“None had written advanced directives,” she said. “Some I had known for years about their condition. I had insight as to their wishes and rapport with the family. That made it somewhat easier to bear.”
Have the talk
Families and healthcare professionals need to talk well in advance about possibilities that lay ahead. Later conversations can then begin not with surprises but from a calmer, “As we discussed …”
“I think what’s needed is to strengthen empathy,” Lopez said. “We can build that with a greater appreciation for arts and culture in medical school and clinical training.
“We need to remember what it means to be human, to be alive and to lose all these in death,” he said. “Families need to be given spiritual and emotional support. That role is being done by nurses, but this should be done by professionals dedicated to the task.”
Doctors harm themselves when they dismiss their own emotions.
“Debriefings are useful,” Tan said. “Often when a patient dies, there is no time — or we don’t make time — to process our grief as we move on to take care of other patients.”
Tap into skills
Aguilar advised these end-of-life people skills: empathy, better communication, strategize, defuse tensions, frame choices well and take some rest.
“Professional counseling can be recommended for family members,” Vidal said. “Grief counselors can be called in to help. Pastoral care should be called to action.
“Vacation or temporary change of social environment can be requested for a young mother or dad who just lost a child, or a spouse,” he said.
End of life is inevitable. Discussions tied to it are difficult by all parties no matter how much experience and practice they’ve had.
“We need to be better communicators and empathizers as health professionals in whatever we do,” Lopez said.
Vidal called for strength of spirit.
“In our darkest moment of life, we need somebody to hold our hands,” he said. “Hold on to Jesus. His compassion never fails. Within a few days, my friend for over 40 years will have a peaceful transition.”
About The Author
Jim Katzaman is a manager at Largo Financial Services and worked in public affairs for the Air Force and federal government. You can connect with him on Twitter, Facebook and LinkedIn.
