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Technically Informed

I recentlykeyboard met with a patient in our cancer center. His oncologist had consulted palliative care to help discuss goals of care and hospice.


Present with the patient were several family members, one of whom asked insightful and technical questions about home and hospice care. After a few minutes, I asked her if she worked in healthcare since she seemed to know so much. She pointed to the iPad in her lap and said, “No, but I have an iPad”.


No, but I have an iPad. We all know technology has become a big part of our lives. As access to the internet increases through the proliferation of devices like smart phones and tablets, more people go online looking for health information. This is particularly the case for those with a recent medical crisis, 65% of whom seek health information online versus the 55% of those not experiencing a crisis ( However, beyond education about an illness, there is some evidence that people go online because they don’t get the information they need from their healthcare providers.  One survey found that people were more likely to go online for information if they felt that their communication with providers was less patient-centered


That leaves those of us who do actually work in healthcare with several opportunities:

  1. Identify information needs- Clinicians need to determine how much and what patients with serious illness want and need to know. Although people go online for information, they prefer to get it from their healthcare providers.
  2. Suggest online resources- To supplement the information we provide in person, we need to suggest good online resources for patients and families interested in getting even more information. There are wonderful medical sites available, so you should know the key ones for your area of practice.
  3. Encourage prepared patients- We need to be open to the fact that some patients and families will come in fully informed and we need to support that. My acknowledgement of this family member’s expertise supported her efforts to help. And, as a result of those efforts, the patient and family knew enough about hospice that we could discuss the specifics of their situation.


So, as we all become more and more dependent on technology, we need to modify our clinical practice accordingly. However, good care will always involve personal interaction. We can’t just leave patients and families to their own devices.

What Such Acceptance Looks Like

“Tell me,” I ask, “what’s most on your mind this morning?" “Dying,” he says, softly, “dying before I’m ready.” Read the rest of this entry »

DNAR: Do Not Attempt Resurrection

I had never thought about the confusion the public might have between resuscitation and resurrection until I saw mention of a poem in October by Dr. Brenda Butka. Read the rest of this entry »

Happy Birthday thanks, in part, to palliative care (but not what you think!)

I recently went to a wonderful birthday party. A good friend was celebrating both a milestone birthday and the fact that she is cancer free for over 2 years now. Partying with her and her family reminded me that she’s a great example of a palliative care story with the kind of happy ending we don’t often hear about: the one where the patient recovers and lives.

She had just had twins when she was diagnosed with an aggressive form of lymphoma. She went into remission after standard treatment, but then the lymphoma came back. The prognosis wasn’t encouraging but no one, least of all I, was thinking hospice was the right next step. This was a mother of 3 small children who had every reason to want to try to live. She agreed to a stem cell transplant and was hospitalized for the treatment. While there, she had very bad nausea and was losing weight, something she didn’t need. She was also in both physical and emotional pain. At my suggestion, she asked for a palliative care referral. When her physicians heard that, they were confused because “she wasn’t dying.” She agreed, and told them that she needed help to manage symptoms so that she could tolerate the treatment to help her live. A wonderful palliative care nurse saw her and got her symptoms under control. She also had the chaplain visit and arranged for her to vote by absentee ballot. My friend survived the stem cell transplant and is now chasing her children around and being a wife, mother, and member of her community.

The point of this story is that she’s an example of what we mean when we say that palliative care is appropriate at any stage of an illness and concurrent with curative treatment. Perhaps if we told more stories like hers, where there’s this kind of happy ending, rather than just stories about good deaths, people would be inclined to think of palliative care more favorably and to ask for it sooner. She’s living proof!

Avastin for Palliative Management of Brain Tumors: A Victory for Patients and Providers

In 2009, the FDA gave accelerated approval to avastin for use in recurrent, high grade brain tumors (glioblastoma and anaplastic astrocytomas). Avastin is an anti-body that removes a circulating protein thought to help tumor make blood vessels: not traditional cytotoxic chemotherapy, which directly kills cells. As clinicians began to use the drug in brain tumor patients, some interesting observations were made. Read the rest of this entry »

“A Palette of Care”: Haslinger Pediatric Palliative Care Center (Guest Post by Dr. Sarah Friebert)

At the Haslinger Family Pediatric Palliative Care Center, each child and family can pick and choose the colors they need or want to create the most beautiful painting possible of life and hope. This image was inspired by two simultaneous events: a letter received from one of our bereaved mothers, thanking us for the care we provided for her son, and a watercolor painting done by a young artist in our program, who was dying of a rare spinal cord tumor but who brought forth onto a canvas the image of a palette of colors as she depicted what palliative care had meant to her and her family during her journey. Read the rest of this entry »

Comparing Symptom Burden in Patients with Metastatic and Nonmetastatic Cancer. (Guest Post by Mike Rabow, MD, USCF)

Our study demonstrated that at least a sizeable minority of patients with curable cancers can still suffer as much as patients with advanced cancer who might be expected to die of their disease. Having found significant unmet need among these cancer patients, the question remains what other patients have significant unmet needs that a palliative care clinic can help address? Read the rest of this entry »

Cancer Survivorship: Does Palliative Care Have a Role?

How can we best support post-treatment cancer survivors who still report symptoms such as chronic pain and anxiety but no longer have a terminal diagnosis? What is the role of palliative care in this setting? Read the rest of this entry »

American Board of Internal Medicine releases new MOC module on Hospice and Palliative Medicine

We have achieved a huge milestone for palliative care. Earn 10 MOC credits by completing of the new ABIM Hospice and Palliative Medicine Self Evaluation Module! This module consists of 25 multiple choice questions, rationale for the answer choices for each question and a set of references. Read the rest of this entry »

Stop the Suffering: Stanford Medicine article on Mr. Daniel Shaine, Palliative Medicine Clinic Patient

“Sometimes the pain is a whole body ache, as if all the bones in his body are broken. Other times, it feels like a knife is stabbing him under his joints, or, on this day, right in the groin.” writes Susan Young about Mr. Daniel Shaine, Palliative Medicine Clinic patient who has severe pain due to cancer Read the rest of this entry »

Palliative Care in LA Times

LA Times columnist Steve Lopez profiles a gentleman with end-stage cancer who, along with his family, is receiving palliative care support at home–“Not Ready To Die, But Prepared”. In this December 4th piece, Mr. Lopez also references some palliative care research, health care policy implications and questions why palliative care and hospice are often not positively represented in political discourse on these subjects.

While at the LA times site, its also worth reading Mr. Lopez’s other, more personal piece, “When Death is Certain, but Dignity is Not.”  In response to his story, many readers have responded with their own.

Dying Cancer Patients

Dying cancer sufferers should not be given “futile” and expensive drugs, experts have said in a warning over the “culture of excess” in treating the disease..... Read the rest of this entry »

Hospice from the inside out

It’s hard to believe a year has passed. One year ago this month, I lost my mother to cancer. I’ve always hated that word. Some time ago, even before Mom got sick, I figured out why. It’s only one letter different than another word: “cancel.” It’s a linguistic cruelty that these words should look so similar. Read the rest of this entry »

A Case Study from Nigeria: The added value of spiritual care and support in a terminally ill-patient and family

A.M is a 14 year old secondary school boy who presented to our facility in March 2011 with a history of progressive scrotal mass extending to the rectum. An impression of locally advanced testicular cancer was made and he was being worked up for tissue biopsy and histology Read the rest of this entry »

Letting go…

She is eating her lunch, as I interrupt that lunch. Yet, she, she already knows. Already knows that some kind of cancer, maybe lung from above, maybe pancreatic from below, has already charted a path from here to tomorrow. A path other than the one she and her husband of some fifty years might otherwise have wished, have ever imagined. Read the rest of this entry »
Can We Talk?
Watch and share this five minute video about the need for prophylactic end-of-life conversations. Laura Heldebrand, an ICU nurse tells her mother's story.
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