Palliative Care Blog

My 91 year old Grandma has congestive heart failure (CHF). She's dependent on oxygen, needs considerable assistance with her daily needs, and is very forgetful. She's also stubborn as a mule and insists on living alone and doing things her way. Not that she means to be difficult but it sure puts a strain on her children who must take turns caring for her. I know they would gladly welcome any help that's available to them.

Based on her current health status, Grandma would qualify for hospice care. Try telling this to anyone of her children, however, and the conversation just falls flat. You see, my aunts (and probably my mom too, though she doesn't admit it) still fall prey to those ugly hospice myths. Hospice means your giving up, hospice means your knocking at deaths door, hospice means you have to stop all treatment. All very false.

You might think that having a registered nurse in the family, one who is certified in hospice and palliative care no less, would make a difference. You probably think that I would be able convince everyone that hospice just might improve Grandma's condition and not necessarily lead her straight to her grave. Easier said than done.

I would be forever grateful if some health professional in Boise would approach the topic of palliative care with my family. Coming from someone other than a family member, it would probably sound pretty reasonable. Until then, I'll continue to gently suggest comfort care by dropping a few hints here and there. Although, if my family actually reads my blog I guess my cover will be blown!

So, if you or your family member has heart disease, how will you know when your ready for hospice care? Here are some resources to help:

The #1 Killer: Heart Disease

I Have Severe Heart Disease. Am I Ready for Hospice?

Hospice Admission Criteria for Heart Disease

About Heart Disease

Have you had to make a similar difficult decision? Share your story in the Palliative Care Forum.

Caregiver stress and burnout are very real risks for the caregivers of ailing loved ones. Caregivers have higher rates of depression, sleep disorders, high blood pressure, and other illnesses than their non-caregiver counterparts. So what gives? How do caregivers get the much needed relief to care for themselves?

In order to care for others, you have care for yourself. If you are exhausted and have nothing left to give someone else, what good will you be to your loved one? It's like the flight attendants always tell you - put your own oxygen mask on before helping your young children with theirs. If you pass out from lack of oxygen while helping someone who's helpless with theirs, your not doing either of you a favor, right?

The good news is that health care providers are recognizing the needs of caregivers now more than ever. The hospice benefit has a provision built into it just for this purpose. Respite care is one of four levels of hospice care that is intended to give caregivers with burnout or other extenuating circumstances a break. Respite care is usually carried out in a nursing home for a maximum of five days. That may not seem like much, but five days to focus on caring for yourself can do wonders when it's time to focus on caring for others.

The New York Times reported today on respite centers who are providing caregivers similar relief. Although respite is usually not covered under Medicare or private insurance for patients not on hospice, the cost of respite can be reasonable and the benefits priceless.

The Four Levels of Hospice Care

I'm frequently asked for advice regarding the initiation of life support measures. Families want to know whether they should start artificial tube feedings for their loved one who can no longer eat, or whether to allow doctors to intubate their loved one to give them a chance at a longer life. I can offer generalized statistics on survival and advice on quality of life but ultimately the decision should always be based on the patient's and the family's personal goals, not mine. I'm always happy to offer some advice to these struggling families and I'm always thankful when the conversation happens before life support measures are already in place.

Once a patient is receiving artificial nutrition or placed on mechanical ventilation, the ethical waters become dark and murky. When do you say that the treatment is futile? What if your loved one wants to continue living? What if you stop life support just days before they would have gotten better? In the case of J.P. in Virginia, he's questioning whether palliative care is right for his mother who suffered a massive bilateral stroke and is now on a feeding tube and has a tracheotomy, which is a tube inserted through the neck into the trachea to help a person breath. Murky waters considering the course of stroke patients can be widely variable.

Thankfully, withdrawing life support usually isn't a one party decision. This is a good thing because a decision that monumental should never be placed on one person. The patients legal decision maker, family members, health care team, and an ethics committee can all play a part in making the decision to stop life support.

Every hospital and health care agency has an ethics committee who's sole purpose is to discuss issues that are ethically controversial. The committee is usually called to discuss cases of withdrawing life support when the decision proves difficult. These committee's typically include people from different disciplines and backgrounds to give a wide perspective of the situation.

J.P has done the right thing by talking with doctors, chaplains and other clergy, and a local hospice agency. He's also searching for as much information as he can find online. Regardless of all the information he gathers and all the advice he gets, his decision will be difficult and extremely personal.

If you're faced with the decision to withdraw life support of a loved one, ask for as much support as possible to ease your burden. The decision will never be easy but it should never be one you have to face alone.

For more information on making difficult decisions, see:

Making Difficult Medical Decisions

Withholding or Withdrawing Life Support

Artificial Nutrition and Hydration

Make Your Wishes Known: Advance Health Care Directives

Hands Off! Do Not Resuscitate

Do you have any advice for J.P.? Share your thoughts and ideas here.

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Pallimed, a hospice and palliative medicine blog, posted a great piece about how medical information can be changed by family interpreters. The post referred to a paper published in Chest Journal that reported findings from a medical study involving non-English speaking families who had a family member interpret medical information. The meetings were recorded and then analyzed by professional interpreters for accuracy. The study found that family members were less than accurate in their interpretations most of the time. Read more about the study in the Pallimed post.

I'm sure there are several factors at play here. Family interpreters who don't understand the medical information they are relaying may inadvertently translate it incorrectly. They may be required to remember large blocks of information at a time and accidentally leave key information out of their interpretation. They may have cultural beliefs that impact what and how much information they will relay to their loved one. I experienced this first hand as an intake nurse for a hospice agency.

I was visiting with a mandarin speaking family doing a hospice evaluation and explaining hospice care. In order to obtain informed consent for hospice services, I explained to the interpretor (the patients son) that I needed the patient to understand the goals of hospice care being palliative, or comfort, care and not including curative treatments for his cancer.

After going through all of the consent forms, including the DNR, and having the patient sign with his son assuring me he understood, the patient's daughter pulled me aside and explained that her brother didn't interpret accurately. She explained that her father would not want to know he was dying and that they decided as a family not to tell him. She said that her brother interpreted hospice as an agency that would come to the home to help him feel better, which is true but not completely accurate.

This was brought before the ethics committee to determine if the consents were valid and really created a difficult situation for everyone involved. Looking back, it would have been helpful to have a discussion with the family before beginning the hospice presentation about their cultural and familial goals and how they would impact any decision for hospice care. I would have discovered the patients desire to have his family make his health care decisions, documented it appropriately, then had his family sign consent forms.

Have you experienced a similar situation?

It's summertime and despite the local swimming hole, ice cream cones, and lawn sprinklers, the heat can be downright uncomfortable - and even deadly. The elderly are at an increased risk of suffering ill effects from the heat. Normal changes that occur with aging, such as poor circulation, ineffecient sweat glands, chronic illnesses, and medications can increase your risk for heat related illness such as heat stroke.

Hot days always put me and my colleagues on high alert. We make sure our patients have fans, plenty of cold water, and that they can recognize signs of danger. In my area, the community centers offer free activites, ice cream, and cold drinks in an air conditioned building. But what if you don't have a hospice agency looking out for you or can't get to an air conditioned center to cool down?

There are some things you can do to beat the heat.

• Stay indoors in a cool area. If you don't have air conditioning, close your windows and shades and use fans to circulate air.
• Stay hydrated. Drink plenty of water and avoid highly caffeinated and alcoholic drinks as they can further dehydrate you.
• Stay rested. Don't do any strenuous activity but rather lie down and rest.
• Take a cool shower or bath.
• Apply cool, damp washclothes to the neck, wrists, and forehead.

If you begin to feel light headed, dizzy, or feel your heart racing, call your health care provider or 911 right away. Heat illnesses are usually very easy to treat when caught early on.

The Centers for Disease Control has more information about the elderly and heat illnesses.

If humans are afforded rights such as the "right to life"; "freedom from torture, cruel, inhuman or degrading treatment"; "the right of everyone to the enjoyment of the highest attainable standard of physical and mental health" than it would make sense that palliative care and pain control be included in the basic human rights. Palliative care is about achieving the highest quality of life and promoting comfort and dignity. We, as humans, have a right to a pain free, comfortable, dignified death. Unfortunately, the right to palliative care and pain control have not been internationally recognized as human rights - but that may soon change.

The International Association for Hospice & Palliative Care (IAHPC) and the Worldwide Palliative Care Alliance (WPCA) have joined forces to develop a Joint Declaration and Statement of Commitment to recognize palliative care and pain treatment as a human rights. The declaration has been signed by various international organizations such as the International AIDS Society (IAS), the International Children’s Palliative Care Network (ICPCN), The International Network for Cancer Treatment and Research (INCTR), and the World Institute of Pain (WIP). Several regional organizations and hundreds of individuals around the world have also signed - including me!

You are invited to view the declaration and add your signature. It's yet one more way to show your support for palliative care, pain control, and hospice care.

Motivated by quality vs quantity of life, a national task force has recommended that doctors stop screening for prostate cancer in men over 75 years old.

Because prostate cancer is typically a slow progressing disease, the task force is recommending that men over 75 years old and younger men with life expectancies of less than 10 years not be screened for it at all. For these men, the treatment for the cancer may be more detrimental to their health that the illness itself, having a negative impact on quality of life.

Reading these recommendations reminded me of similar recommendations made for older women in regards to breast cancer screening. I blogged about this recommendation in "Should the Elderly be Screened for Cancer" . The idea was the same - elderly women who were screened and diagnosed with breast cancer often suffer a poor quality of life related to the cancer treatment.

These new recommendations for men and women make me wonder what the older population will do. They stand to gain, or lose, the most after all. Will older men give up prostate screening and older women give up mammograms? Should screening for these cancers be withheld from the older population? I'd love to hear your thoughts.

Read the full New York Times article about the task forces' recommendations.

We all know that when an elderly or ill person falls, their risk of breaking a bone can be high. But other injuries can occur that may be even more serious. The New York Times published an article by Anne Marie Valinoti, M.D in it's "Cases" section about a patient of hers that had fallen and remained on the floor for 15 hours before someone found her. She escaped any broken bones but lying on the floor in one position for an extended period of time had lead to rhabdomyolysis.

Rhabdomyolysis occurs when muscle is broken down and the proteins within the muscle poison the kidneys. It's a serious condition I saw several times in my years as a critical care nurse, most of the cases being caused by falls. Luckily, for Dr. Valinoti's patient the outcome was positive. She recovered without any serious complications.

Preventing falls in the elderly and the palliative care patient is important to maintaining quality of life. There are several steps you can take to make your home safer and help prevent falls.

Preventing Falls: Home Safety for the Caregiver

The Centers for Medicare & Medicaid Services (CMS) has finalized the 2009 wage index. They issued a press release detailing the cuts to the hospice reimbursement rate:

Hospices serving Medicare beneficiaries will see a 2.5 percent increase in their payments for 2009 according to a final regulation published today by CMS.

The increase in the hospice wage index is the net result of a 3.6 percent increase in the so-called “market basket” indicator of cost, offset by a 1.1 percent decrease in payments to hospices as CMS phases out a transitional payment to these providers.

As published in the Federal Register on July 31, CMS is phasing-out an adjustment to the hospice wage index that was put into place over 10 years ago to help hospices through a transition to the new wage index. Phasing-out this special adjustment will save Medicare $2.18 billion over five years. It is estimated that payments to hospices would decrease by approximately 1.1 percent for FY 2009, the first year of the three-year phase-out of the adjustment.

CMS reports that this is fiscal responsibility as hospice payouts have increased dramatically in the last 10 years. The National Hospice and Palliative Care Association (NHPCO) says the cuts are jeopardizing patient care. They have issued a press release of their own in retaliation of the cuts:

“Let’s be clear, the Administration’s cuts will seriously hurt the most vulnerable – the terminally ill,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization (NHPCO), which represents 4,000 hospices nationwide. “By issuing this rule, CMS is taking an end run around Congress and its longstanding role protecting hospice.”

“The government’s reason for its decision that would effectively cut rates – the need to save money – simply isn’t true,” noted Jonathan Keyserling, executive director of the Alliance for Care at the End of Life, an affiliate organization of the National Hospice and Palliative Care Organization. “Research has shown that hospice saves the Medicare system money, is highly rated by family members of hospice patients, and enables the patient to die at home in most cases,” says Keyserling. “This rule defies logic, and will have a direct, negative impact on care at the bedside.”

First of all, I want to thank everyone who supported the National Hospice and Palliative Care Association (NHPCO) and contacted your legislatures requesting they sign a petition to CMS that opposed cuts to the hospice reimbursement rate. Your efforts were not in vain. I'm with NHPCO on this one and strongly oppose the cuts to hospice. I know that the cost of care hospice already provides is often offset by charitable donations because the reimbursement by CMS is just not enough. Cutting the wage index could potentially limit the already strained services.

The NHPCO is urging hospice advocates to continue to take action to oppose the cuts. To find out how you can be an active advocate for hospice, visit the NHPCO's Legislative Alert Center.

In a recent blog, "More Sex for Seniors", I discussed the upswing in the number of senior citizens having sex. A Swedish study found that more seniors are engaging in sexual activity now than in years past and cited good health as one of the possible reasons since our older population is healthier now than ever before. But what about the older population who aren't so healthy? And what about the younger population facing an incurable illness?

Maintaining sexual intimacy can be just as important to a palliative care patient and their significant other during their illness as it was before their diagnosis. Sometimes it becomes even more important as they realize their time together may be limited. But the typical palliative care patient and their partner can face several barriers to maintaining the physical bond they once shared. It's important to understand the barriers that can get in the way and to work on overcoming those obstacles to achieve a healthy sexual relationship.

Sexual Intimacy and the Palliative Care Patient

Overcoming Barriers to Sexual Intimacy

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