Palliative Care Blog

I met a family the other day who had brought their 91 year old matriarch home from a nursing facility to die. They wanted to honor her wish to die at home, surrounded by family - and surrounded by family she was. There were at least ten family members in the home pitching in to care for her as she died, and each one played an important role.

One daughter was terrified and listened intently to everything that was said; another daughter had been an aide in a hospital and was able to help with the logistics of her care, such as turning their mother and repositioning her in bed; one son was deemed the primary caregiver and would be responsible for giving medications and providing the bulk of her physical care. This dying woman also had a daughter-in-law who took on the role of asking the very detailed, but little thought of questions, and two granddaughters who laid on her bed with her and recalled stories of the past, "Grandma, remember the time we...".

It was a beautiful thing to be a part of. Although this family believed they knew little about how to care for their loved one, they were doing it without even thinking about it - it was instinctual. With a little medical guidance from me paired with the love they had for this special woman, they were able to honor her wishes and provide her with what I would call "a good death".

I've written a new article to help other families that are faced with the task of caring for their dying loved one. It provides information on what they might expect as their loved one journey toward death and tips to help keep their loved one comfortable. If you are a family member or caregiver for someone who is dying, I hope you will find this information helpful.

Acts of Love: Caring for a Dying Loved One

The Dying Process: A Journey

Interacting with a Dying Loved One

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_{Photo © Photodisc/Getty Images}

Beginning this fall, Yale University will require medical students, and encourage nursing and divinity students, to participate in a comprehensive palliative and end-of-life care curriculum. The students will work through interactive case studies and communicate with each other on blogs to share their ideas. The interdisciplinary students will also collaborate in workshops to gain insight on working as a team when caring for patients and their families.

According to the press release from Yale, "Students will learn to recognize spiritual distress in a patient and how to conduct an empathetic, respectful open-ended dialogue to help reveal the patient’s concerns, as well as other interventions to provide support and encouragement. The students also will be encouraged to recognize how their own spiritual and cultural beliefs might affect the way they relate to and provide care for patients at the end of life."

Yea for Yale! Let's hope more schools - medical, nursing, divinity, and social work - follow suite.

I don't know about you but I'm a little freaked out over the weather patterns in the last couple of years. Tsunamis, hurricanes, cyclones, tornadoes, floods, fires - I mean, what is going on? I'm in California so I, of course, am waiting for "the big one" - the big earthquake that will send my house crashing to the ground. I'm already storing water and non-perishable food in crush proof containers and I make my husband remind me every so often how to shut of the main gas line to prevent us all from blowing up if it's punctured.

Okay, I know I'm being a little melodramatic and perhaps a bit paranoid, but a healthy fear of mother nature is always a good thing. It's what keeps us on our toes and prepared for the worst. So, I'm pretty prepared, but what about the elderly, the infirm, and the dying?

Hospice agencies and caregivers have the responsibility of not only making sure their personal disaster plans are in place, but must also have a plan for their patients. A recent blog on Caregiverlist.com reminds us all that we should have a plan in place in case the worst happens and includes a list of things health care agencies need to know to formulate the plan.

Pallimed, another hospice and palliative care blog, posted an interview with David Wensel, DO, a hospice & palliative medicine physician for Hospice of North Iowa in Mason City, IA about the recent floods in that area and what challenges they faced. Here is just a small excerpt from that interview:

Pallimed: What are the important lessons learned from the flooding to share with other hospice agencies as they look at their own disaster planning?

Dr. Wensel: The greatest lesson learned is to plan for the worse case scenario. As a hospice think about if you lost half your staff, some of your patients had to be evacuated, and you had no safe water. You can never plan for every possible problem that might come up, but it would be very helpful to talk through different disaster plans with your staff. You never realize how wonderful it is to wash your hands, brush your teeth or take a bath until you can't. I had never thought about all the things we do to care for patients that require water.

Do you live in a disaster-prone area? What steps have you or your agency taken to implement a disaster plan?

Adding to recent discussions on medicating dementia patients with anti-psychotic medications, I have a new article bring to your attention. The New York Times ran an article by Laurie Tarkan about the overuse of anti-psychotic medications in dementia patients and under use of Alzheimer's medications. This comes on the tails of the FDA mandating black box warnings for older anti-psychotic medications in addition to the warnings on the newer, atypical anti-psychotics that use of the medications may lead to an earlier death.

Tarkan points out that roughly one-third of nursing home patients have been on anti-psychotic medications and that these types of drugs are overused in nursing facilities. Despite the efforts of some homes to provide emotional and behavioral treatments other than medications, most nursing homes "are short staffed, and insurers do not generally pay for the attentive medical care and hands-on psychosocial therapy that advocates recommend. It is much easier to use sedatives and anti-psychotics, despite their side effects," Tarkan suggests.

So, with all this recent coverage of over-medicating dementia patients, what are your thoughts? Are doctors over-prescribing anti-psychotic medications to dementia patients? Are nursing homes advocating medication because they don't have enough staff or resources to handle behavioral issues? What can families do to ensure their loved ones with dementia are getting the best care possible?

Read the full New York Times article and recent blog posts then share your thoughts.

In a recent post I alerted you to a warning from the FDA about psychiatric drugs possibly contributing to the earlier deaths of seniors with dementia. The post encouraged caregivers to look at alternative means to controlling behavioral symptoms of dementia before resorting to medication, such as changing the environment.

A report published last week in the Journal of the American Medical Association (JAMA) and covered by the New York Times exhibits one easy way to change the environment of someone with dementia: bright lights. Researchers found that patients who were exposed to bright lights had fewer symptoms of dementia. The researchers, led by Dr. Rixt F. Riemersma-van der Lek, spent three and a half years studying the effects of light and melatonin on more than 180 patients in 12 residences for the elderly in the Netherlands. They found that the light appeared to reduce cognitive declines and symptoms of depression and that melatonin helped improve sleep and reduced symptoms of aggression.

This study reminds us that it is worth it to try other simple and less risky treatments to reduce symptoms of dementia before starting an anti-psychotic medication. Bright lights, melatonin, and other methods such as group cognitive therapy and life recall may not always be enough to reduce anxiety, agitation, and aggression, however. Many patients with severe symptoms will still need medication to reduce these behaviors.

If you have concerns about your loved ones behavior, talk with your doctor about all possible treatments. If you've had success in changing a patients environment and reducing behavioral symptoms, please share your experience with others! Add your comments below or post in the palliative care forum.

If you're a caregiver of an ailing loved one, you know you are doing one of the most important and most difficult jobs out there. You also know that when you're not well, your loved one isn't getting the best care possible. But, do you know the toll caregiving may be having on your health?

The Department of Health and Human Services (DHS) and Centers for Medicare and Medicaid (CMS) are sponsoring a satellite broadcast for caregivers on June 25, 2008, 1-2:30 PM (EST). The broadcast, Health Implications of Caregiving, is designed to help caregivers

• Learn about the impact caregiving is having on your health.
• Learn simple tips to preserve your health while caring for a loved one.
• Hear about programs specifically developed to support you.

For more information about the broadcast, send an email to caregivers@cms.hhs.gov.

You can register for the broadcast here.

Health Tips for Caregivers

The FDA warned doctors this week that prescribing antipsychotic drugs to dementia patients may increase their likelihood of death. Antipsychotic medications, such as Risperdal and Zyprexa, are approved to treat schizophrenia and bipolar disorder but are also commonly prescribed to elderly patients with dementia. They are typically prescribed to dementia patients to treat dementia-related psychosis which may include agitation and combativeness.

The FDA has ordered that these medications must now carry a black box warning, which is the most serious warning a drug can have.

The FDA is in charge of regulating the approval and marketing of drugs but physicians have a lot of freedom in prescribing medication "off-label", meaning for purposes that are not FDA approved. There is no FDA approved treatment for dementia related psychosis and the FDA is continuing to urge physicians to explore other treatment options.

So, what does this mean for you? If you have a loved one suffering from dementia, think twice before allowing their doctor to prescribe antipsychotic medication for them. Have you tried other things to minimize their behavior? Dr. Eric Hollander, a professor at the Mt. Sinai School of Medicine says, "A lot of the things can be done to help change one's environment so elderly patients can be more oriented and engaged."

Changing one's environment? Sounds pretty easy but it isn't always so. While there are many specialized dementia units throughout the country that provide excellent care for dementia patients, most nursing homes still have a long way to go. If your loved one is in a nursing home and their physician has recommended an antipsychotic drug, try calling a meeting together with the doctor, nursing home director, head nurse, social worker, and activity director. Perhaps you can all brainstorm ways to change your loved ones environment or daily routine to reduce their anxiety.

If your loved one is at home, you can still find many resources to help you cope with behavioral problems before consenting to antipsychotic medications. Carrie Hill, PhD., About.com's guide to Alzheimer's Disease has many resources to help you manage behavioral symptoms.

Palliative Care for Dementia

Yesterday was father's day and millions of dads (and millions of not-dads) gathered around their televisions to watch the broadcast of the U.S. Open. My husband was one of them. I was able to enjoy the occasional tee off between wrestling the kids and cleaning out the closet. My husband had his eyes on Tiger Woods and Rocco Mediate; I only had eyes for the U.S. Open Challenge foursome that included Justin Timberlake, Matt Lauer, and Tony Romo. Yeah, golf is a very visual game for me. So, who was this obscure, unknown fourth person in that fabulous foursome?

Turns out it was John Atkinson, a 39 year old husband, father, and life-time non-smoker who was diagnosed with terminal lung cancer in 2007. John won an essay contest sponsored by Golf Digest and the U.S. Open, securing him a once in a lifetime opportunity to play alongside some of the most handsome...eh hem... I mean most talented golfers in the U.S. In his essay, John wrote, "I've enjoyed golfing throughout my chemotherapy. Golf gives me great pride, inspiration and strength as I continue teeing it up with my friends. Nothing's better than taking your buddies while on chemotherapy!

"If I can beat America's deadliest cancer, then I can definitely break 100 at its Open. Everybody will witness a man with a heart of a champion and a soul of a survivor. More importantly, you will understand why you never, never NEVER give up!"

John is an inspiration to us all. Whatever treatment options he's faced with - whether it's chemotherapy, radiation, or palliative care - John has shown us that he will continue to live his life and play a game he loves. A game that, so far, has provided him with emotional and physical well-being. Here's to hoping that John can continue "taking" his buddies on the course!!

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_{John Atkinson tees off with Justin Timberlake Photo © Scott Halleran/Getty Images}

A study presented at the annual meeting of the American Society of Medical Oncology reveals that patients who have had end-of-life discussions with their doctor report better deaths than those who have not. The study involved 332 cancer patients who eventually died; just over one-third recalled having end-of-life discussions with their doctors.

Compared with the patients who did not have end-of-life discussions, those who did:

• Were 1.6 times more likely to access hospice care in time to receive it's benefits,
• Were 3 times more likely to complete a Do Not Resuscitate (DNR) order,
• Were twice as likely to complete advance directives,
• Were no more likely to report symptoms of depression, and
• Were no more likely to report anxiety, fear, or worry when asked.

Some doctors have a hard time discussion end-of-life issues with their patients. They may fear extinguishing a patients hope or giving information that a patient doesn't want.

What does this mean to you? If you want all the information you can get on your illness and your prognosis, you may need to make the first move and initiate open, honest discussions with your physicians if they haven't done so already. It's important to take control of your own care and to have loved ones acting as advocates.

You can find more information and tips on taking charge of your medical care from Trish Torrey, About.com's guide to Patient Empowerment.

_{Source: American Society of Clinical Oncology 44th Annual Meeting, Chicago, May 30-June 2, 2008.}

A report published in the June 11th issue of the Journal of the American Medical Association (JAMA) by researchers at Virginia Commonwealth University (VCU) Massey Cancer Center brings to light the role of chemotherapy in the treatment of advanced terminal cancer. The study provides guidance to health care professionals on when and how to reduce or stop chemotherapy at the end of life.

A patients quality of life appears to be the glue that holds all the pieces together in this study. Researchers found that about 15-20% of patients receive chemotherapy within 14 days of their death and point out that in these late stages of the illness chemotherapy has little to no chance of helping. They also point out that patients who receive chemotherapy at such a late stage may have a poor quality of life as a result of side effects of treatment and the lost opportunity for personal and spiritual growth through the dying process. Also important is the fact that terminal cancer patients who use hospice care tend to live longer and continuing with chemotherapy prevents patients from accessing hospice.

The authors recommend that physicians be honest with their patients regarding their illness from the beginning and discussing hospice when appropriate.

Read the article in VCU's News Center