What is the goal of palliative care?

Most of us do not want to die in the ICU tethered to tubes — not the quality of life we expect. Yet only 30 percent of us have made arrangements to prevent this from happening. Death and dying is a tough subject for us to broach. Be aware that very few of us will die in our sleep — most have a slow sometimes excruciating decline to death.

As we get older it  becomes important to have a family discussion about what to do if you’re incapacitated in the hospital with not much hope of recovery. Advanced directives such as Do Not Resuscitate (DNR), a Living Will, or Durable Power of Attorney are important decisions to make. Providers are trained to go to heroic efforts to keep patients alive even when all hope is gone.  This often results in severe pain and suffering. There have been many horror stories of the pain and suffering from brittle ribs broken during CPR.

I bet you didn’t know that less than one in seven CPR recipients live to leave the hospital (don’t feel bad, many doctors don’t know this). Other studies show that few elderly patients or patients with cancer live to leave the hospital after CPR. Despite the fact that CPR was developed to resuscitate patients in cardiac arrest, CPR is mandatory to rescue the terminally and critically ill, unless there is an advanced DNR directive. One in five people die in intensive care with the last few months of life being expensive, painful, and futile exercises in medical care.

Thanks to palliative care medicine, doctors as well as medical students are being taught the importance of saying the ”D”-word.  Palliative (or comfort) care differs from hospice care in that it can happen along with aggressive life-sustaining treatments. Palliative care teams of doctors,  nurses, and social workers provide patients and families with the information they need to make painful choices, including decisions to avoid overly invasive care.  What patients and their families want is for doctors to be clearer and more realistic about what’s going on.

The aim of palliative care is for patients to live as well as long as possible while preparing them and their families for death.

So, please talk with your family and make arrangements so you can die peacefully and with the dignity you deserve.

Jeffrey I. Kreisberg served on the faculty the University of Texas Health Science Center at San Antonio where he was a Professor of Pathology, Medicine, Surgery, Urology, and Molecular Medicine.  He is the author of Taking Control of Your Healthcare. He blogs at Taking Control of Your Healthcare and can be reached on Twitter @kreisberg.

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  • petromccrum

    Unfortuneately some medical facilities have no regad for patient/family wishes. So even if you think that your are prepared be aware that in some cases your wishes/legal documents are totally ignored. There has got to be a better way!!

  • Hornblower1810

    Designing and implementing an Advanced Health Care Directive is not a simple issue. You need to be aware of your state specific laws regarding AHCD documents and have the final document reviewed by a qualified attorney.
    As a health care professional, (PA,CCP) I worked most of my adult life in critical care areas and witnessed first hand the futility and horror that some terminal patients were subjected to. I don’t believe in a “Hell” after death, but I do believe you can think you’re there before death.
    My personal AHCD is detailed and very specific as to what procedures I will allow and what I will not allow. I have given my son a Medical Power of Attorney and explained to him in writing what different Dr. talk phrases actually mean. Such as “there is always hope and we will do everything we can” translates to, “your father is dying and there is zero chance of recovery”.
    My AHCD is registered with the Living Will Registry and I carry a wallet card with a code that allows any health care provider to quickly obtain a copy.
    I have also instructed my son to demand my transfer to either a hospice if appropriate or another acute care facility if physicians refuse to follow my wishes. They can also be reminded that performing procedures that I have expressly refused against my will or his instructions can constitute criminal assault.
    My planning is more detailed than most people will probably ever need but I’m a big believer in preparation.

    • Molly_Rn

      As a former ICU/CCU nurse I can tell you that you can’t be more detailed. Thinking of a tatoo on my chest: NO CPR NO SHOCKS

  • James Sinclair

    I have a colleague that has a hard time honoring DNR requests. He tells the family “what if the patient swallowed a pea?” “Let’s do CPR and intubate to be sure.” Physicians mirror the population with the fear of death and the sanctity of life. The migration of CPR from use in cardiac arrest in the field to use at the end of natural life is a system problem, not a people problem. Aerospace figured out that plane crashes were a system failure not a people failure and fixed the system. Can we do the same thing? Advanced Health Care Directives are cumbersome but perhaps the best we have currently. Is society ready to make natural death the default position and CPR the exception that must be requested? I think not.

  • http://www.facebook.com/people/Arnold-Wax/100000381145770 Arnold Wax

    Television has given us unreralistic expectations as to what medicine can actually accomplish.The presence of an advance directive, does not mean ignore the underlying condition if it isreversible. Twenty years ago I was placed into a situation, in which a patient with a DNR and a history of lymphoma developed a spinal cord abscess. Because of the Halo traction he was having difficulty breathing. It was opted to intubate for a short time, in regards to allowing for healing of the abscess, while resting his lungs. I was contacted by his attorney, who brought the DNR issue up. The attorney was advised that all of the treating physicians felt the situation was reversible. After 7 days, the patient was extubated and went on to live another 15 years.
    The moral of the above parable is physicians need to use their judgement and disregard a DNR when appropriate, and not to blatantly refuse to accept the wishes of a person when the situation calls for it, i.e. an end stage cancer.
    Advance directives and now POLST rules are the only means we have available to understand the wishes of an individual and to take emotions out of the equation.