Posts tagged communication

What Is Palliative Care?

by Ruth Mugalian, Public Communications Inc.

Read the full article about defining palliative care in the Winter issue of The Quarterly.

When I talk about my work with hospice and palliative medicine specialists and why I enjoy it, I usually say something like this: “They’re doctors who take care of very sick patients. They relieve their symptoms and make them feel better.” It should be a communications professional’s dream. It’s simple, understandable and positive. There’s no esoteric medical jargon or complex technical language to translate into layman’s terms.

And yet, that simple, positive description doesn’t quite capture it.

Describing what hospice and palliative medicine specialists do is an evolving challenge, as evidenced by the many different ways the doctors explain their work. Unlike many other medical specialties, there’s no simple one- or two-word description, like “heart surgeon” or “cancer specialist.” “They relieve symptoms” is far too narrow, but also too broad. Don’t most doctors relieve symptoms? And, what about all the other care they provide: the help with decision making and navigating the system, the coordination of care, the support for families?

Just summarizing the breadth of care is challenging enough, but of course, there’s another challenge. The heart surgeon fixes the heart. The cancer specialist attacks the cancer. HPM doctors don’t cure. They provide the care that helps the surgeon and the oncologist cure, and that helps the patient endure the cure.

And sometimes there is no cure. That’s when the HPM’s role takes on special meaning and ironically and frustratingly gets twisted into something negative: they withhold care, give up on the patient, hasten death. Of course, the opposite is true. They stay on the job when others have no more to offer. They continue, or begin, providing care when others have stopped. They’re passionate about controlling pain. Snappy phrases are tempting: “They don’t cure, they care.” “They never stop caring,” “Helping you endure, with or without a cure.” They’re simple, understandable and positive, and they don’t quite capture it.

After the Bad News… When Patients Hear Something Different than What Was Said

How many times have you begun a conversation with a patient or family, only to discover their understanding of the situation is far different from what the referring physician has shared with you?

All too often, it seems, judging from the large attendance at this informative, lively session that led attendees through the labyrinth of difficult, high stakes conversations. The role-play exercise—a PC consult with a determined mother of teens who believes she’s discharging to rehab to “get stronger for chemo” — stimulated a discussion that identified techniques, pitfalls, and ethical boundaries.

The take-away of techniques included three communication approaches: offering a hypothetical situation (have you thought about what you’d want if the chemo isn’t effective?), offering hope/worry language (I’m hoping you’ll feel better and be able to go home to spend time with your family, but I’m worried that your body is very sick, and this might not be possible) and naming the dilemma.

Some techniques to avoid common pitfalls included communication with the team after to conversation to ensure a common message and reduce team distress, and avoiding splitting, even bringing the referring physician to the meeting, if possible.

The concept of planting a seed—taking the conversation only as far as the patient appears able—emerged as we explored the ethical boundaries of sharing unwanted news, weighed with our duties to the patient and family to provide accurate information to empower informed decision making.

While we recognize that some patients and families may stay “stuck,” the goal of these conversations, and indeed all care, is to maximize the chances for better outcomes. Thank you Drs Jacobson, Thomas & Jackson for an enlightening session.

Karen Whitley Bell, RN, CHPN

Quality and competency: Invisible members of the palliative care team, the Medical Interpreter

We spend a lot of time speaking of physician, nursing, social work, pharmacist expertise in palliative care. We often see and support formal training for volunteers. (www.volunteertrainingonline.com/hospice; www.hospicevolunteertraining.webs.com) We teach the importance of culturally competent care and use of interpreter services to enhance communication with patients and families of other cultures and with limited English. Studies have shown the miscommunication that occurs when interpreters are not used in medical encounters.

At the European Association of Communication in Healthcare (EACH) conference in Verona Italy the opening keynote speaker, Phyllis Butow, a psychologist and professor of psycho-oncology and medical communication, presented research that caused me pause and concern. Her research, conducted in Australia, demonstrated that our assumptions about accuracy of language transmitted to patients/families when interpreters are used may be flawed – especially when interpreters lack training in giving bad news, end-of-life care, etc.

Her interviews with interpreters also revealed that professional interviewers define their role as cultural (as well as language) interpreters. In doing so, “cancer” sometimes was described as “mass” or “tumor” according to her presentation. Interpreters expressed similar cultural biases and fear of giving bad news as many other healthcare professionals.

  • How often does this happen in North America, as it seems to in Australia?
  • How much training do medical interpreters in the US, Canada, and other countries receive in delivering bad news, end-of-life care, death and dying?

Mandating the presence of a medical interpreter may not be enough when it comes to improving cross-cultural and inter-language communication in palliative care scenarios: we need to include medical interpreters in our definition of interdisciplinary teams, provide them training (not just teach physicians and advance practice nurses how to work with interpreters) in giving bad news.