Tuesday, January 31, 2012

Discussing Goals of Care with Very Ill Patients

“Words matter. What clinicians say and how they say it hugely affect patients. Communicating about emotionally and medically complex topics such as advance care planning, preferences for care, prognosis, and death and dying is challenging,”   Steve Pantilat, MD, Professor of Clinical Medicine and Director of the Palliative Care Unit at UCSF wrote in a 2009 JAMA article.

Pantilat recently spoke to an audience of more than 100 physicians and other health care professionals at a Nov. 29 ethics conference held at El Camino Hospital in Mountain View on “Better Words to Say: Communicating with the Very Ill Patient.”

“It’s not about the patient’s willingness to have this kind of conversation, but about [physicians’] willingness to have the conversation,” said Pantilat.
Discussing end-of-life issues with patients is not associated with depression, sadness, terror or worry according to research done by Wright and published in JAMA.  In fact, this sort of conversation leads to better quality of life, fewer invasive interventions and better outcomes for caregivers.  But how do we go about having the conversation?  Here are some of the highlights of that talk and some useful approaches Steve Pantilat has learned over the years.

Ask open-ended questions to establish what the patient and family know.

Examples of questions he asks are: “When you think about what lies ahead, what worries you the most?” and “When you think about the future, what do you hope for?”
The answers to these questions may be very different than you anticipated and may guide care decisions.  For instance, if a patient says he wants to have chemotherapy and visit his home town, the physician may recognize that the visit may not be feasible after chemotherapy, and that if it will not significantly change the outcome of the disease, perhaps the patient should take the trip first.

Listen and sit down.
Pantilat referred to a well known study done in the 1970s that demonstrated that patients perceived their physicians’ visits to be much longer than they actually were when the physician sat down to talk with them.

Pantilat suggests that physicians listen for at least two minutes before talking (which he admits may seem interminable at the time).  He emphasizes the value of not interrupting since most important things don’t come out at the very beginning of a conversation.

Avoid jargon, use simple language and check understanding.
Patients will often nod as though they understand although they are clueless to the meaning of what you are saying.  Pantilat says that the answer is usually “No” to the question “Do you have any questions?”  But he has noticed a distinct difference when he subtly rewords the question to say “What questions do you have?”

“Accuracy is not critical,” said Pantilat.  Patients and families don’t need to know an exact prognosis, but they do need a realistic frame of reference.  He suggests using ranges such as “hours to days,” “days to weeks,” or “weeks to months.”  One person may interpret “not long” as days while another may think it refers to a year.

Offer a prognosis. 

“False hope is not hope because it is not based in reality,” said Pantilat, reminding his audience of the research published in the NEJM that found that TV patients had a 79% rate of survival with quality life after CPR, whereas in real life the numbers are far grimmer.  The problem is that the public gets its information from television.
Discuss death explicitly.
Talking about death can be a great relief, says Pantilat.  He suggests practicing difficult conversations and in this setting suggests phrasing such as, “Many patients with lung cancer tell me they think about the possibility of dying.  They have questions about this.  How about you?”

Remain sensitive to the patient’s culture.
Pantilat cautioned about assuming all persons of a particular culture have similar beliefs and suggests the solution lies in asking, “In your family how do you make medical decisions?”  His experience has told him that patients often know much more than physicians or families realize.   Although they may never have been spoken to directly about their disease, the visits to a cancer center, increasing treatment, arrival of family members from afar and a host of other clues tell them about their condition.

Pantilat does caution that we should always ask how much the patient wants to know, regardless of what the family has said.  To be sensitive he often asks, “I have information about your condition.  Some patients want to know the details, others prefer to have me talk to someone else.  How do you feel?”

Use better words.
There is never a time when it is appropriate to say, “There is nothing more we can do.”  Pantilat suggests instead, “There is no more we can do to cure your disease.”  And rather than arguing with family members about the futility of treatments, Pantilat likes to put himself on their side by saying, “I wish there was something we could do to make your cancer go away.”

Ask helpful questions.

Questions such as, “Would you like us to do everything possible?” are not helpful and will always be answered “Yes.” However, “everything” may mean all possible curative medical treatments to the physician, while the family interprets it to mean all possible efforts aimed at keeping their loved one comfortable.  Pantilat finds it clarifying in this situation to ask, “How were you hoping we could help?”

Be aware of your non-verbal communication.
Asking someone if they have any other questions while your hand is on the door sends a loud message and the answer will usually be, “No.”

Pantilat concluded by acknowledging that this process is usually more than one conversation and that physicians should share the responsibility with others such as the palliative care team, social workers, and chaplains.  Discussions about goals of care are good for patients and families: Use better words.

Tuesday, January 24, 2012

More Seniors Living Beyond 90

1.9 million Americans have reached the age of at least 90 years according to a recent report by the National Institute on Aging and the US Census Bureau.  This comprises nearly 4.7% of the entire population.

Over the last 30 years, the size of this age group has tripled, creating changes in the landscape of elder housing and elder care.  Nearly 20% of those 90 and older live in nursing homes.  Senior living facilities are home not only to older, but sicker, residents now. 
“Traditionally, the cutoff age for what is considered the ‘oldest old’ has been age 85,” Census Bureau demographer Wan He said. “But increasingly people are living longer and the older population itself is getting older. Given its rapid growth, the 90-and-older population merits a closer look.” 

The complete report can be found at: http://www.census.gov/prod/2011pubs/acs-17.pdf.

Tuesday, January 10, 2012

Dysphagia & Managing Oral Secretions

As residents near the end of life, one of the signs most often encountered is the loss of the ability to swallow.  This article will look at how to manage this problem.

How It Begins

It often begins before the resident is actively dying with dysphagia, or trouble swallowing, usually caused by weakness and poor neurologic function.  The resident may cough, clear his throat, or sputter while eating or drinking.  Thickening fluids may help to start with, since thicker liquids are less likely to pass into the trachea which can lead to aspiration pneumonia.

Preventing Pneumonia

Later, even making fluids thicker is not enough.  The gag reflex and reflexive clearing of the throat decline.  It is probably time to stop feeding the resident at this point to prevent pneumonia.  Usually this comes at the same time as loss of appetite; the resident does not experience hunger any longer and though feedings stop, it does not cause distress.  It is important to take the time to explain this process to the family.

Noisy Breathing

As the resident becomes less aware and it is clear that death is nearing, those at the bedside may hear a rattling, gurgling, crackling noise with each breath.  This is caused by the build-up of secretions in the throat; the resident cannot swallow them the way most people normally do.  This noise is sometimes called a “death rattle,” (although this term should never be used around families and caregivers).


These noisy respirations can be very disturbing to family and caregivers.  It may be helpful to try to dry the secretions by using an anticholinergic medication such as atropine or scopolamine.
Atropine drops (normally used in the eye) may be ordered for administration under the tongue and scopolamine patches (often used to prevent motion sickness) can be applied behind the ear.  Both seem to work equally as well, and neither affects survival time.  These drugs can be used in the unconscious dying patient before noisy breathing begins to prevent it from happening.

Non-Drug Treatments

Repositioning the resident can help to clear the secretions.  Turning the resident far to one side and then the other (to a semi-prone position) may allow the secretions to drain through the mouth (be sure to have a towel ready for drainage).  Raising the foot of the bed very briefly while on the side may also help, but never leave the resident in this position for more than two or three minutes at the most.


Oropharyngeal suctioning is not recommended.  Suctioning can be very distressing to the resident and family, and it is often ineffective since the secretions are usually beyond the reach of the suction catheter.  Suctioning can also stimulate more secretions.

Tuesday, January 3, 2012

A Quick Review of COPD

A Progressive Disease

Chronic Obstructive Pulmonary Disease is a lung disease that causes a blockage or narrowing of the airways.  This results in decreased ability to move air in and out of the lungs. The disease has a slow, progressive course and is irreversible.


COPD is the 4th leading cause of death in the US: 120,000 Americans annually.  It is expected that by 2020, COPD will become the 3rd leading cause of death worldwide.  Men are more likely to have COPD than women, and it usually occurs in those over 40 years old.


There are three types of COPD and all of them require the patient to work very hard at breathing.
  • Emphysema: Air sacs (alveoli) of the lungs are damaged and enlarged.  This reduces the amount of surface area for the exchange of oxygen and carbon dioxide.  Less oxygen can move into the body and less carbon dioxide can be expelled.
  • Chronic Bronchitis: Inflammation of the bronchial tubes which can cause them to swell.  This can leave less room for air movement.
  • Bronchiectasis: Permanent widening of the large air tubes which begin at the bottom of the trachea and branch into the lungs.

The most significant risk factor is, of course, smoking.  The American Lung Association estimates that 80% to 90% of people diagnosed with COPD are chronic smokers.  Secondhand smoke is also a major factor, causing 3,400 lung-related deaths annually.  Research also shows a link between air pollution and work-related exposure, such as coal mine dust, silica, cotton and grain dust.


Most symptoms include: breathlessness with any activity, chronic cough, increased sputum production, wheezing, chest tightness and frequent chest infections.

Other signs and symptoms may include swelling, weight gain and obesity, (which may be a side effect of medication therapy), a round barrel chest, coughing blood, and cyanosis (bluish coloring often seen around the mouth).

Diagnostic Testing

To make a diagnosis of COPD, a complete assessment must be taken including family history, environmental and occupational exposure and smoking history. Additional tests may include:

  • Blood work such as arterial blood gases, hemoglobin and hematocrit levels
  • Chest x-ray
  • Pulmonary function tests
  • Bronchoscopy
  • Pulse oximetry


The main treatments for COPD include medications (bronchodilators, expectorants, antibiotics and corticosteroids), oxygen therapy, pulmonary rehabilitation, and at the end of life, morphine to ease shortness of breath.