It鈥檚 the conversation no one wants to have, yet it happens in uncountable numbers of doctors鈥� offices every day: A physician informs a patient that their ailment has progressed to the point where the question is no longer how to treat it, but how much time the patient has left to live.
No patient wants to receive such news; no doctor wants to give it. But there are ways to deliver bad news in a way that leaves a patient feeling cared for and with a purpose to the rest of their days. A local doctor and professor, a cancer survivor and a social worker recently shared their views on what doctors and patients can do to soften the blow of a terminal diagnosis.
The doctor
Doctors are taught how to diagnose their patients鈥� ailments and treat them; in short, to make their patients鈥� lives better. But sometimes the news isn鈥檛 good聽鈥� the diagnosis is the worst-case scenario; maybe the prognosis is for a drastically shortened life.
It鈥檚 still the doctor鈥檚 responsibility to provide care in these moments, even if it鈥檚 not the kind of heroic, lifesaving care one typically goes into medicine for. But thanks to Dr. Christina Puchalski, at the George Washington University Medical School, breaking bad news to a patient is part of a future doctor鈥檚 education.
Puchalski is the founder and director of the Institute for Spirituality and Health at the George Washington University Medical School and has written extensively on the importance of a spiritual aspect to medical care, particularly at the end of life. The institute began in 1992, and since 1996 its courses have been a required part of the medical school鈥檚 curriculum.
Puchalski told 草莓传媒 recently that listening is the key: 鈥淗ow to listen deeply to a patient聽鈥� not just come in, sit down, give the diagnosis and leave.鈥�
Medical students follow up classroom study by working with 鈥渟tandardized patients鈥澛犫�� actors who enact six scenarios, from first diagnosis to recurrence and onward, until they鈥檙e enacting a visit at a hospice. 鈥淭hey learn through that progressive experience how to have these conversations at different stages,鈥� Puchalski said.
Each case is different, of course: 鈥淪ome people want to hear a very blunt (opinion) 鈥� other people, you have to be a little more responsive to where they are.鈥� But students in her program learn how to 鈥渂e compassionate and fully present for the patient. 鈥� You have to use intuition as well as your awareness of where the person is, to know when to just stop talking and give the person a chance to process, and just sit with that bit of news first.
鈥淎nd if they start crying, to respond to that 鈥� to say 鈥楾ell me what鈥檚 going on right now鈥� 鈥� We can鈥檛 take that suffering away from them, but to listen to where they are and be present for that, and help the patient process it at their own pace.鈥�
She worked with a playwright to put together a skit exhibiting more- and less-helpful ways to hold difficult conversations:
‘Not just sitting there waiting’
Puchalski said doctors need to strike a balance between being too blunt and sugarcoating the truth. She鈥檚 had patients who are alive and kicking 20 years after having been given six months to live. 鈥淭hese conversations can鈥檛 be so black and white. 鈥� But you can鈥檛 just pussyfoot around.鈥�
She said 鈥済enerally speaking鈥� is a good phrase to use while talking about a prognosis, and keeping the emphasis on what can be done聽鈥� for example, something like 鈥淭he chemotherapy is no longer working, and it鈥檚 causing more side effects than benefiting you, so we can still continue to treat you (with palliative and hospice care) so that you can have a good quality of life.鈥�
Puchalski also teaches doctors to set up what she calls 鈥済oals of care.鈥� For example, a patient might want to see their child graduate from high school, or get them launched into adult life. 鈥�(So) what are some things you can do right now that would help launch them? Some way to find meaning in whatever time they have left, and some way to focus on what matters most.鈥�
Spirituality might not necessarily mean religion. A patient might experience spirituality by being in nature, or with their family, or doing whatever they value most聽鈥� some people, Puchalski said, want more than anything to work as long as possible.
The most important goal, she said, is to make sure 鈥渄ying is not just sitting there waiting.鈥�
This kind of training isn鈥檛 just a matter of patient care, Puchalski said; it鈥檚 critical to a doctor鈥檚 process of self-care and well-being. It goes to the core of what it means to practice medicine: 鈥淗ow do we help (physicians) live out that vocation to serve others?鈥�
She called the conversation 鈥減robably one of the most difficult conversations to have 鈥� We want to have a sense that we鈥檙e making a difference in our patients鈥� lives. But there are many stresses in health care today that make it difficult to do that.鈥�
A doctor could be running behind, with a tight schedule, but having to move on and 鈥渓eave the patient in their misery鈥� is not only a disservice to the patient, Puchalski said; it鈥檚 a factor that leads to burnout or worse, as depression and even suicide among doctors is on the rise.
鈥淲e can teach (clinicians) how to break bad news, but at the same time we need to teach them to look into themselves. 鈥� What is your inner life about? What is your vocation? Why did you become a doctor? And when clinicians pay attention to that part of themselves 鈥� and when they can practice what they fully believe in 鈥� both the patient and the clinicians benefit.鈥�
Otherwise, 鈥渃linicians are going to run away from this conversation 鈥� and patients and clinicians are going to suffer.鈥�
The patient
JoAnn Symons, a cervical cancer survivor, said that was key when she got the bad news. 鈥淎fter surgery, they said to me 鈥榊es, you have to have chemo, but we have more effective drugs now to help you get through that.鈥� Because a lot of that鈥檚 just terrifying聽鈥� to hear 鈥榗ancer鈥� and 鈥榗hemo鈥� for the first time applied to them. But there are ways to soften those blows.鈥�
Symons is a member of Rhonda鈥檚 Club, the Ovarian and Gynecological Cancer Coalition. The club鈥檚 Survivors Teaching Students program visits 111 medical schools and 118 nursing schools, as well as nurse practitioner programs.
The visits, she said, are critical: Students 鈥渄on鈥檛 read much about the patient perspective in their textbooks,鈥� she said. 鈥� 鈥� They鈥檙e more likely to remember it.鈥�
Rhonda鈥檚 Club also endorses the idea of 鈥渘urse navigators鈥�: One person who is assigned to follow the patient through their course of treatment, helping them with everything from paperwork to scheduling with specialists. 鈥淎nd just someone they can call to talk with at any point,鈥� Symons said. 鈥淏ecause we don鈥檛 expect a surgeon to be available to talk with patients around the clock.鈥�
Symons advised patients to bring a companion or relative into the consultation, 鈥渂ecause it鈥檚 so technical sometimes, and they鈥檙e so overwhelmed, that it鈥檚 important to have an extra set of ears there to hear exactly what鈥檚 going on.鈥�
She advised doctors to 鈥淕et a reading from your patient on how much they want to know.鈥�
鈥淪ome older patients don鈥檛 want to hear all the medical details; some younger patients are a little more savvy聽鈥� they鈥檝e looked everything up on the web and they want to know exactly what鈥檚 going to happen to them.鈥�
The social worker
Mick Neustadt, a licensed social worker at the Wendt Center for Loss and Healing, in D.C., works with patients who have received a terminal diagnosis, as well as people whose relatives have gotten one.
He said both patients and relatives can fall prey to 鈥渆motional exhaustion,鈥� and said it鈥檚 important to recognize that emotions ranging from anger to sadness to confusion are normal. 鈥淎ll of those are part of the process.鈥�
Similar to Puchalski鈥檚 advice to doctors, Neustadt鈥檚 principal advice for patients involves prioritizing. 鈥淕ive yourself the time you do have to really put your energy toward what鈥檚 most important to you, in terms of being with the people who are most important to you. And also to give yourself time for reflection.鈥�
He said that kind of reflection almost always leads to the need for forgiveness聽鈥� both to ask for it and to offer it: 鈥渢aking stock of life lived, and coming to a point, if you can, of softening and forgiving yourself in terms of a letting-go, and forgiving others 鈥� looking back as you are coming to the end of life, and you realize there are all these things that you held on to.鈥�
Everyone has had many relationships and influences that steered their actions in life, he said, and it鈥檚 important to the process of forgiveness to keep that in mind. 鈥淛ust (slow) down to recognize and to forgive others who may have harmed you, recognizing that they, too, were the subject of many different conditions, and they did the best that they could in the situation they were presented with.鈥�
He added that social media can help people stay in touch, especially after they may lose the ability to leave the house.
Learning you don鈥檛 have much time left is the ultimate loss of control, Neustadt said, and prioritizing, forgiving and opening up to you feelings gives a patient the sense that 鈥淚 do have some part in how I want to live for the time that I have left.鈥�
While Neustadt acknowledges that his work 鈥渃an take its toll鈥� on him, preparing someone to let go can have its own successes 鈥� 鈥渋f they were able to have time to come closer to themselves, to look inward, have some time for reflection and introspection, and they were able to soften, even just a little bit, around going into death. 鈥�
鈥淚f the person really felt acknowledged by me, and they felt listened to, I think that鈥檚 what makes it a success.鈥�
