End of Life Care: Why Doctors Need Incentives to Talk With Patients About End-of-Life Care

This week the Obama administration pulled back on a Medicare provision that would have compensated providers for discussing end-of-life care. This is an unfortunate reversal.

The problem is that many people don't get the kind of care that they would choose for the end of life. This happens because most doctors fail to raise the subject until patients are gravely ill. There are many reasons for this, including some physicians' -- even oncologists' -- discomfort with the topic of death and dying. Some fear diminishing their patients' confidence in their healing powers. Some cave, consciously or otherwise, to a conflict of interest: infusing chemotherapy is profitable; prescribing palliative home care is barely so, if at all.

Good doctors may take genuine pride in solving medical problems their colleagues can't: if you can figure out what drug to give a patient and make them well, that's gratifying. Competition factors in, too; the work can border on gamesmanship, when one oncologist wants to shrink a tumor another couldn't control. And hope: it's not just that patients and families don't want to give up; fine physicians can become so invested in their patients' cases that they, themselves, lose perspective and objectivity regarding the odds for recovery.

Many doctors are simply too busy to broach the subject before a patient becomes critically ill. If you have a waiting room full of people waiting to see you, it's hard to bring up a "what if" scenario and discuss a patient's wishes for the end-of-life in a thoughtful, not rushed way. The Medicare provision might have helped some peo­ple get the kind of end-of-life care they'd choose, instead of what's given automatically.

The issue is not about death panels or rationing of care. It's about respecting patients' wishes.
For example, an oncologist might ask a patient with lung cancer whether they'd want to be kept alive if their disease progressed to the point that they'd need mechanical support on a ventilator. A primary care physician might ask a well, 65-year-old woman if she'd want to be sustained in a comatose state with a feeding tube and other devices for weeks or months or even years after suffering brain damage from low oxygen after a heart attack or some other untoward, unexpected life-threatening episode. In each of these circumstances, if a doctor has discussed the subject with the patient in advance, it's more likely the patient will get the kind of care he or she wants at the end of life.

Meanwhile, and always, I recommend that patients be proactive about their preferences. If your doctor doesn't mention the subject of advanced directives, tell her what you want and put it in writing. Here's a partial list of sites that provide related information on this subject:

MedlinePlus on Advanced Directives;

New York State: information on Health Care Proxy forms and DNR orders;

Medicare on Preparing for Your Future Health Care Needs;

Caring Connections on Advanced Directives;

Family Caregiver Alliance on End-of-Life Choices.

 

Follow Dr. Elaine Schattner on Twitter: www.twitter.com/medicallessons

Comments

[ModerateMedicalDoctor]

03:48 PM on 01/10/2011

Applying a narrow bit of research to a broader population, the New England Journal of Medicine has recently published something for healthcare workers, researchers and families to talk about. In an article titled "Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer", researchers have found that patients benefit in several ways from early palliative care. That doesn't mean nothing is done to treat underlying disease in the often very sick patients. Early palliative care does, however, mean INCREASED survival time as well as quality of life in certain cases. Please read, and discuss what this article means with your doctor, nurse, representative, senator or anyone who you think needs to know. Again, the following article addresses a narrow population of patients, but may lead the way for more research on a wider variety of illnessess/situations in the future.

http://www.nejm.org/doi/full/10.1056/NEJMoa1000678

N Engl J Med 2010; 363:733-742August 19, 2010

[SactoBill]

11:03 PM on 01/09/2011

These kinds of consultations are so necessary. I've seen two family members die without proper end-of-life documents in place and both were catastrophes. In fact, here's a link to a new book that tells very graphicaly of all the things that can go wrong when government and the medical-industrial complex won't accept patient wishes.
http://www.amazon.com/s/ref=nb_sb_ss_i_2_29?url=search-alias%3Dstripbooks&field-keywords=what+you+wish+for+bill+pieper&sprefix=what+you+wish+for+bill+pieper

[Damiano Iocovozzi MSN NP]

05:09 PM on 01/09/2011

End of life planning is easy & should be devoid of the emotions surrounding other life events since we will all pass away one day. End of life planning is a wonderful gift to give children, taking away the stressors of what Dad or Mom would have wanted should they be presently unable to tell their children. With an advance health care directive filled out with diligence, understanding what one may endure in an ICU or a code blue situation without accomplishing any honest medical goal, parents give a gift to their children when they tell them in advance what their wishes for a happy death are. In the mean time, between the years that define one's life, one can live, love & laugh with abandon, savoring the gift called a life span, not worrying about the number of days in one's life, but rather, the life in one's days. That is a gift of real love to those who remain & a joy to others when one realizes there's a beginning and an end. For blogs and podcasts about sanity at end of life, please visit http://www.soonerorlaterbook.com Damiano de Sano Iocovozzi MSN FNP CNS at the Thomas Edwin Walls Foundation

[kathbee]

04:38 PM on 01/09/2011

This whole thing is so confusing to me as a nurse. With every hospital admission patients are offered the chance to sign Advanced Directives as well as choosing a healthcare power of attorney. Hospice nurses address this regularly as do nurse Case managers and social workers. My company offers a free information kit complete with needed forms for anyone requesting. The public is not without a multitude of options for awareness and opportunities for making out Living Wills. Why in the world the "death panel" term was ever used completely evades me too - when this all started, it was nothing new in the arena of health care and what professionals, other than physicians with no time to spare, already do for patients. The law would have expanded that, for those who aren't otherwise seeking, listening or comprehending the importance of 'death with dignity' and making their wishes known to all through end life planning. I can see why our government gave up - the public, obviously some politicians, and too many journalists have acted like knuckleheads about a non-issue...

[2garen]

12:04 AM on 01/10/2011

The public may have several options with that said the information is still not getting out to the public.
Hospice information is given out in a slip shod fashion at best. It has to do what some criteria from one state to the next.
A very heart rendering situation in my opinion.

[redsquirell]

03:17 PM on 01/09/2011

If we need some doctor we hardly know to make such intimate decisions for us, one has to ponder the integrity of the family; and our overall understanding of how things work. I do love the "too busy" model. Very accurate, but does a carpenter get paid if he's too busy to build your house? Do your job or don't take the money; not a foriegn concept. I have worked in hospice for many years and believe much of the mental anguish is un-avoidable during the process of dying, but much can be alieved by some attempt at proper understanding well before one becomes sick and disabled. People have to educate themselves and care for their loved ones and not leave something this important totally in the hands of strangers, know matter how benevolent. I have seen about as many families help as hurt and it takes everyone to intervene on the side of the patient's wishes and hopefully those were written down. I have often disagreed with family members if I felt the patient was in pain and have found that with the right education and a calm demeanor most people do not want their family members to suffer unnecasary pain. We will all die some day; we need to tell our wishes to our loved ones and/or write them down with a lawyer if you have the $$$.

[Primadonna]

02:10 PM on 01/09/2011

My father gave me the huge gift of "being" with death - his own. I can recall feeling such great fear about my demise from way back in childhood. I believe what I observed in my Catholic upbringing also played a role. His gift to me in being with him through his dying process was a huge unburdening lifting from my entire being. And replaced with glorious calm and intense loving energy. I have incorporated being with those who are transitioning, and their loved ones, in my coaching practice. Does it really come down to treating one's patients with dignity near their end a measure given by financial reward? Should it not just be a part of an attending doctor's care? I can't imagine compartmentalizing humanity in one's duty as a care provider. It is a true honor to be with someone when they are transitioning ... being in loving presence for the them and for their loved ones. I will add, however, the hospital staffing is so overburdened that there really is no one available to do the small things for our loved ones while there in the hospital. Small things that mean comfort to our loved one. Hospice is invaluable.

[redrosebud]

12:04 PM on 01/09/2011

Since our society sees death as the ultimate punishment (death penalty), speaking of it in any other terms rings false. In order to be comfortable in the conversation, we have to adopt the attitudes of cultures that see death as the next step on the journey and not as retribution for a crime.

[Suzanne525]

12:14 PM on 01/12/2011

Excellent comment. Often, before I fan someone, I check their other comments to ensure fanning is appropriate. I am proud to be your fan. I lost my husband 8 years ago, and a brother on Christmas Day (years ago), so I understand how holidays are affected by such losses.

I completely agree that our society is afraid of death and views it, as well as aging, as punishment.