When a physician becomes the patient

I want to direct readers to the latest article in the New York Times "Months to Live" series. The article features Dr. Desiree Pardi, a palliative care doctor, who when faced with the end of her own life, decided to defy the usual advice she gives patients and fight the cancer until the end. The article explores the complexities of physicians' advice and how things change when the physician becomes a patient. I definitely recommend reading and contemplating.

Putting off difficult discussions

The New York Times had an article earlier this week about the difficulty physicians have with discussing end-of-life care treatment with terminal patients. The conversations are difficult, but important, and include such decisions as aggressiveness of treatment, resuscitation and hospice. Guidelines dictate that such discussions take place when the patient has a year left to live, so the patient can make decisions along with their families. But many physicians fail to have those conversations until much later. It is easier to suggest more treatment than to have a difficult conversation with a patient about his or her impending death. But failure to have those conversations may result in more aggressive treatment than a patient desires and death in a hospital when a patient would have preferred the comforts of home. While the conversations are difficult, physicians who learn to have these conversations help their patients live their last days as they wish.

Fellow inmates provide hospice care in prisons

The New York Times had a compelling article about the growing geriatric prison population and how some prisons are starting hospice programs to provide care for the aging population. Some of the programs use prison volunteers, other prisoners to visit and provide comfort to the dying prisoners, who may not have family members who will visit in their dying days. The programs appear to have a dual benefit, both for the dying prisoners and for the prison volunteers. The dying receive some comfort at the end of life; the volunteers make a human connection with another person and learn to express empathy and emotions many have buried for a long time.

There are some challenges with programs like this, especially the risk that dying prisoners will pass pain medications the volunteers, who can sell them to the general prison population. But the prison volunteers can provide a compassionate ear in a way that a guard or nurse simply cannot.

Talking about end-of-life care

A provision in the proposed health care reform legislation to reimburse physicians for discussions with patients about their wishes at the end of life has been misunderstood and even misinterpreted as government intervention to ration care to elderly patients near the end of life. The provision is gone now, but the provision has started conversations about end-of-life care in homes and doctors offices across the country. Conversations about what the kind of care patients want at the end of life should be ongoing, both with the patient's physician and the patient's family. But when a patient is near the end, often the person to have the difficult end-of-life conversation with the patient is a palliative care specialist. The New York Times had a compelling article today about palliative care doctors and how they approach their difficult job. I think the most important part of this article is the conversations that it is capable of generating, both online and in hospitals and physicians offices and homes across the country. The only way to assure that you or a loved one will reach the kind of end-of-life care you want at the end is to have ongoing, respectful and honest conversations.

Convent offers model for end-of-life care

The New York Times had a compelling article this week about a convent in New York providing comfort, care and support to elderly sisters at the end-of-life. The sisters in the convent communicate with their social network and their physicians about the care they wish to receive, and ultimately the death they want to have. Most of the sisters die at home in the convent, surrounded and comforted by their loved ones, and without aggressive medical treatment if they so choose. The convent offers a model of care for elderly patients, in which they are able to express their desires, and to be comfortable and at home in their last days. At the core of the model are open communication between patients, physicians and the social network and respect and tender care for patients at the end.

The power of being able to talk at the end-of-life

The New York Times had a compelling case yesterday written by a psychoanalyst who examine the importance of being able to talk at the end-of-life. The author captures the dignity that patients experience when they can talk about their fears and hopes surrounding life and death. It is an important reminder of why all health care workers should strive to make sure patients have a voice, both in their care and to tell their story at the end of their story.

The importance of compassionate communication at end-of-life

There’s nothing like a networking event to get you reenergized about the work you do. Last night I attended a Marquette alumni networking event and I got into a conversation with an alumna who is a hospice nurse and also has a background in communication. In the course of our conversation, she asked me about some of the trends in communication research in health care. After telling her a little bit about the study I am working on at the Medical College of Wisconsin, I said that there is a tremendous amount of compelling research on situations she would be familiar with: communication about breaking bad news and communication about the end-of-life.

Sure enough, Dr. Pauline Chen’s column this week was about communication at the end-of-life and the difficulties it raises. These are difficult but very important conversations. These conversations are especially difficult because they are layered with family members who may not be ready to accept such a diagnosis, the uncertainty the physician has at the length of time a patient may have left, and religious and cultural beliefs about death. Physicians also worry about taking away hope from their patients. But studies have found that patients who are made aware of their condition have a better quality of life in their final days.

I was also excited to tell my fellow alumna about my own research on nurse-patient communication regarding end-of-life care, and was especially pleased to be able to tell her that after three years of revising and editing, my article was accepted for publication in Patient Education and Counseling.

These are important conversation for physicians, nurses, patients and families to have. And as Dr. Chen points out, they should not be one-time conversation, but should be ongoing.

a nurse's perspective

Registered Nurse Theresa Brown offers a beautiful perspective of a nurse's distress over a dying patient. She also writes about the hard time families and physicians and doctors have when a patient is near death. Everyone wants to do the right thing, but it can be hard to know what the right thing is.

You can find the article here.

Patients feeling abandoned by their doctors

Dr. Pauline Chen reports on a study published in the Archives of Internal Medicine which examines the emotions of physicians, caregivers and patients near the end-of-life. Many patients and caregivers reported feeling abandoned by their physicians. Physicians were aware that patients might feel abandoned, and even believed they were taking steps to prevent it, but patients still reported feeling abandoned in their last hours. Dr. Anthony Back, lead author of the study, attributed the misunderstanding to physicians who may not realize the importance of closure to patients. And patients may not be able, or think they need to, speak up.

You can find the article here and the comments here.

What do you think?

More on the last lecture

The New York Times ran an article this week about Randy Pausch, the Carnegie Mellon professor whose "last lecture" containing all the advice he wanted to pass on to his children, has become a media sensation. Pausch, who is dying of pancreatic cancer, is taking his unexpected celebrity to promote funding for pancreatic cancer research. He has also written a book of all the advice he want to pass to his children.

You can find the article here: http://www.nytimes.com/2008/04/08/health/08well.html?ex=1365393600&en=dd3eec2a2c1d6a93&ei=5124&partner=permalink&exprod=permalink.

I missed the ABC special, but Pausch has certainly succeeded in getting people to talk about their dreams and fears. And he has created a lasting legacy for his children.

Last Lecture

I came across a New York Times blog about a Washington Post article about Carengie Mellon Professor Randy Pausch. Earlier in September, he took part in the Last Lecture series, a series of lectures in which professors are asked to think deeply about the topics that most capture them and to give a hypothetical final speech about the topic. But for Professor Pausch, this isn't hypothetical. He is dying of pancreatic cancer. But he refuses to feel sorry for himself or let others feel sorry for him. He even did one-arm push-ups on stage. He took the stage to encourage others to pursue their dreams and to overcome roadblocks on the path to your dreams. He encouraged his colleagues and loved ones to continue to do great things without him.

Here's a link to a clip of the speech:
http://link.brightcove.com/services/link/bcpid452319854/bctid1199157902

Here's the full two hour lecture from Carnegie Mellon:
http://www.etc.cmu.edu/global_news/?q=node/42

Here's someone who is making sure he shares his final thoughts with those he loves and in doing so inspiring us all to go for our dreams.