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Making Difficult Decisions: Goals of Care

As patients and their loved ones navigate a life-limiting illness, they face several difficult decisions that need to be made. Identifying goals of care is a good place to start.

Other Difficult Decisions

Palliative Care Blog with Angela Morrow, RN

Cutting Hospice Care is Poor Judgement

Sunday January 11, 2009
Florida may be following in the foot steps of South Carolina, eliminating coverage for hospice care for Medicaid only patients. Of course, lawmakers "regret" having to make "difficult" decisions like this in a time of economic crisis. Well, listen up lawmakers...You don't!

I'm utterly perplexed that any state could consider cutting hospice benefits as a way to save money. Multiple studies have shown that hospice care actually SAVES our health care system money at an average of $2,309 per hospice beneficiary. Think about, lawmakers... If someone doesn't have hospice care and has a distressing symptom, where are they going to go? Probably the emergency department of their local hospital. The bill the hospital will send you for their care will be a heck of a lot higher than the one hospice will send you. This is not rocket science people!

To quote Don H. Taylor, Jr, the lead author of one study showing the cost effectiveness of hospice, “Given that hospice has been widely demonstrated to improve quality of life of patients and families...the Medicare program appears to have a rare situation whereby something that improves quality of life also appears to reduce costs." We know that if hospice has proven to save Medicare so much money, it will also save state sponsored Medicaid programs money as well.

Our United States lawmakers have a history of spending our money unwisely with their "pork barrel" projects and such, but this kind of decision is not only financially unsound but morally and ethically wrong. No one should be forced to suffer at the end of their life with no support, nor should they be forced to die in a hospital just to receive pain and symptom management. It's one thing to make poor financial choices that don't negatively impact the health of our citizens (i.e. the "bridge to nowhere") but when these decisions result in pain and suffering of millions of dying Americans, you've gone to far.

I encourage all of you to speak up about this issue. Contact your lawmakers and make sure that hospice is a benefit that stays.

More on Hospice Care:
What is Hospice Care?
4 Myths about Hospice
Does Choosing Hospice Mean I'm Giving Up Hope?
What are the Advantages and Disadvantages of Hospice Care?

Should Informed Consent Include Info on Better Care Elsewhere?

Tuesday January 6, 2009
Imagine yourself newly diagnosed with cancer. Would you want to if the hospital in a neighboring town had better cancer care than the one near you? Imagine choosing a hospice agency to help you live out the last chapter of your life as comfortably as possible. Would you want to know which one provided the best care? A thought provoking article published today in the New York Times begs the question: "Should Patients Be Told of Better Care Elsewhere?"

Citing an article published online in October in the journal PLoS Medicine, Denise Grady points out that cancer care varies widely from hospital to hospital. The same goes for about any type of specialized care. Some places simply do it better than others.

Skill increases with practice. This is the reason medicine is so specialized. You wouldn't want a heart surgeon performing your brain surgery, right? Likewise, you wouldn't want a intensive care physician overseeing your palliative care. You would most likely want a physician experienced in doing what you need done.

The question is, should your physician be required to inform you if there is a better hospital, clinic, health care agency, or physician elsewhere? The answer may seem clear but Grady points out opposing views from physicians and bioethicists. Take a look at her article and share your thoughts here.

New Years Palliative Care Resolutions

Thursday January 1, 2009
I'm usually loathe to make New Years resolutions. I can't count how many times I've resolved to loose five (okay, maybe ten) pounds only to end up on December 31st exactly where I was the year before.

My Palliative Care site was launched just before the New Year last year. I made a resolution last year to raise awareness of palliative care and hospice issues. I think that I've succeeded to some degree but I still have a long way to go.

This year, my resolution is the same: To raise awareness of palliative care and hospice issues. I do have some specific things I'll do this year to make it happen:

  • I'll read more research articles and do my best to interpret them and share the results with my readers.
  • I'll broaden my content on disease specific issues.
  • I'll try to include more international news and information.
  • I'll be more active in my Palliative Care Forum, offering my presence and support to it's members.

I'm sure there is much more I can do to optimize my site and your experience here, but this is start. It might just take up all the time I have for the gym, however, so that extra five (alright, ten) pounds may have to wait until next year!

California Passes Pediatric Palliative Care Waiver

Thursday January 1, 2009
At a time when many states are making extreme cuts to their Medicaid programs, California goes characteristically against the grain and passes the Pediatric Palliative Care Waiver. California is the third state to pass such a law that will ensure that pediatric patients who are still undergoing curative treatments will also have access to expert palliative care treatment.

According to the press release issued by Children's Hospice and Palliative Care Coalition:

"Under the new system, the services that will be added to the package of current MediCal offerings include: community-based care coordination; respite care; expressive therapies such as art and music; family training; and bereavement counseling. These new benefits effectively enable children living with certain medical conditions who are under age 21 and eligible for full-scope MediCal to access community-based support services through a licensed hospice provider concurrent with ongoing curative therapies intended to cure their disease or prolong their lives."

I applaud California for taking a position on this matter. Children with life-threatening illnesses need the comprehensive support that a hospice and palliative team can provide without having to make the decision to stop curative treatments. I would love to see Medicare loosen their restrictions on hospice and palliative care so Medicare recipients could receive the same type of benefits.

Pediatric Palliative Care

The Tiniest of Patients: Perinatal Hospice

The Nick Snow Children's Hospice and Palliative Care Act of 2006

Partnering for Children

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