You may have seen the latest message tirade from the right -- health reform equals rationing equals hospice equals euthanasia.

Give us a break.

The House bill would encourage advanced planning. It would not mean that "old people could be visited in their homes and essentially be told, 'all right, sweetie, you have had a good life.'" It would not send government bureaucrats into homes to counsel seniors about how to cut their life short. It would not "start us down a treacherous path toward government-encouraged euthanasia."

Republicans talk about choice, and about patient autonomy and decision-making. Advanced directives encourage, and enable, informed choices. They encourage, and enable, conversations between patients and doctors. They encourage and enable conversations in families. They make it more likely that choices are respected and carried out -- which is not always easy in a medical system where the default is usually to do more and more, and in a culture where the default is often to avoid thinking about or talking about death and dying.

An advanced directive does not mean you are choosing not to get care. You are choosing what kind of care you want to get. If you want aggressive, high-tech care in an ICU, you can say that. If you want a feeding tube and a ventilator, you can say that (and our system certainly is geared up to give it to you). If you want more palliative care, you can say that. If you want hospice, you can have it (Medicare has covered it for more than 25 years). But you don't have to have hospice, and health reform isn't going to change that.

There are a lot of different approaches to advanced directives (Five Wishes, POLST, health-care proxies to name some) but their purpose is to help old, sick, or vulnerable people, who may not be able to speak for themselves anymore, to live out their days according to their wishes, beliefs, and values.

No one would say every patient and family has a perfect, peaceful, rose-colored experience in hospice. I personally have written about some of the quality issues in end of life care and some of the limitations of hospice. But certainly we can't say that people have perfect peaceful experiences dying in ICU units or nursing homes either. Particularly if they wanted to die at home.

Ironically, Laura Ingraham, who, while guest-hosting the O'Reilly Factor was critical of provisions in the House bill addressing end of life issues, has Capital Hospice on her website as one of her favorite charities. No reason it shouldn't be. Hospice is one of the most holistic -- in the sense of complete -- aspects of our health care system. Hospice doctors, nurses, social workers, volunteers, home aides and chaplains help patients and their families with pain and symptoms, with the challenging tasks of at home-care giving, and with spiritual and emotional support during the illness, the death, and the period of bereavement.

Here's what the Hospice Foundation of America said this week in an unusual press release (they don't usually respond to political controversy.)

In yesterday's segment on healthcare reform, your guest host Laura Ingraham addressed the requirement in the current healthcare bill that doctors periodically discuss advanced directives and end-of-life care options (including hospice care) with their patients. While doing so, she indirectly gave a startling and misleading characterization of hospice care: "Now I find that to be creepy, for the president of the United States to be saying basically, we hope more people -- you old people, you get sick, you know, we encourage you to look at hospices... Go die. Go to a hospice and die."

Hospice care is apolitical and Hospice Foundation of America is a nonpartisan public charity. Thus, we normally stay far away from political debates. However, Ms. Ingraham's comments portraying hospice as merely a place to die and her suggestion that hospice advocates seek to shorten life are so wrong and so harmful that they must be addressed.

Hospice is not a place "to go to die" and those who support hospice do not wish death on the infirmed. As a philosophy of care, hospice seeks to add quality to the last weeks and months of life for those suffering from incurable illness. More than a third of Americans who die every year die in the care of hospice. The people who choose hospice do not choose to give up on life. Instead, they wish to spend their final moments at home with their loved ones, aided by doctors and nurses who specialize in pain management and supported by counselors and clergy who are experts in pastoral care.

 

 

 

 

The AARP, whose mission is not exactly shrinking the rolls of our elderly, also weighed in. National spokesman Jim Dau said of the drive to encourage advanced planning:

It is a misleading and cruel interpretation of a humane measure that actually has bipartisan support. This measure would allow Medicare to compensate doctors for discussing with their patients the most difficult care choices -- those that happen at the end of life. It would actually empower individuals to make the best decisions for themselves and their families, and better ensure that their wishes will be followed.

 

 

 

 

The American Cancer Society, which pushes for research and access to life-saving and life-prolonging care, has also made pain management, decision-making and quality end of life a cornerstone of its health reform agenda.  They want standards and quality and good payment for the time-consuming task of providing high quality palliative care and end of life care. 

We don't know when someone is going to die; we do know when someone is sick. We need to do a better job of creating a continuum of care, where patients can get palliative care, pain and symptom management and emotional support, earlier in the course of a serious disease without giving up curative treatment. We need hospice, for those who choose it. We need a health care system that covers all these needs, for all patients and families. And we need a health care system that encourages and enables people to talk about their needs and their  preferences, and get them fulfilled.

(PS. Rep. Earl  Blumenauer wrote about the end of life rhetoric at the Huffington Post, and he also has a Myths and Facts sheet on his website about the House bill's end of life provisions.)