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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_{Photo © Alex L. Fradkin/Getty Images}

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?