Dad's declining, Mom's distressed. We need options.

Originally published in the Lincoln Tribune, June 17, 2008

This question was asked of one of my colleagues last weekend, but I think on any given day there are many families that need to hear their options.

Q: My father-in-law is in the hospital, and they have told us he may not last much longer. My mother-in-law is close to a breakdown. What are our options?

A: Your whole family needs extra care and compassion in the days ahead. Let's begin with your father-in-law.

● Ask his doctor for an inpatient admission to hospice. It's crucial for the whole family that hospice be involved in the coming days. Many hospitals partner with a hospice to offer services on-site, without ever moving patients from their beds. Does your father-in-law want to stay in the hospital? Is something preventing him from moving? If so, an inpatient admission to hospice may be the answer.

● Move to a more comfortable location. If your father-in-law can be moved, the hospice care team can follow him wherever he goes—and being away from the hospital might relieve some of your mother-in-law's stress. Is going home an option? If not, I suggest a transfer to a hospice house or long-term care facility where he can receive a high level of care in a comforting, homelike environment. Ask the hospital social worker or hospice team member to help you find nearby facilities.

● Get help for the whole family. Your mother-in-law is obviously not doing well; my guess is that your wife and the rest of the family aren't, either. Whether your father-in-law is at home, in the hospital, or in a facility, hospice nurses, counselors and chaplains are available to support and educate the whole family during this difficult time. Tell the hospice team member you are concerned in particular about your mother-in-law, and would like to get her and the family more emotional and spiritual support. 

If a family you know is going through a difficult time like this, I encourage you to give them a call or stop by to see them. A few minutes of your time can make a world of difference.

CNA's: Worth their weight in gold

Originally published in the Lincoln Tribune, June 10, 2008

This week, I would like to acknowledge one of the most hands-on members of any care team: the Certified Nursing Assistant (CNA). National Nursing Assistant's Week is June 12-19, a special time to recognize those who work so closely with our loved ones.

If you have ever been in a hospital or nursing facility, you probably saw CNA's doing a variety of tasks. They help patients with everyday tasks like dressing, bathing, or eating. Nurses and doctors often call CNA's their "eyes and ears." Their regular visits virtually guarantee they will see the changes in a patient's condition before anyone else. Because of the intimate nature of their work, CNA's often become deeply compassionate toward their patients. Many CNA's I know also have great senses of humor, allowing them to gently defuse an embarrassing or stressful moment. They are, as hospice guru Malene Davis likes to say, "worth their weight in gold."

I have seen how compassionate CNA's can make the most mundane task become memorable. Years ago when I worked for a nursing facility, we had a young woman who was paralyzed from multiple sclerosis. She was unable to bathe herself, and had only been able to receive showers or sponge baths. After three years of being bedbound, the girl mentioned how much she missed having a real tub bath. Three CNA's helped fulfill her wish. They spent hours helping give her an extended bath in the facility's whirlpool, complete with bubbles and scented soaps. Her mother and I were delighted to help. Those CNA's made an everyday occurrence something truly special.

Take a moment this week to thank a CNA for his or her work. Nurses like me couldn't do it without them!

Please continue to send your questions to asklinda@pchcv.org!

The Cost of Hospice

Originally published in the Lincoln Tribune, June 3, 2007

Q: My granddad has lung cancer, and he just decided to end his treatments. Mom and I think he is more than Grandma can handle right now. No one will ask them about hospice, though, because they say it will cost too much. How much does hospice really cost?

A: Very little, as compared with his radiation treatments or a hospital stay. As a senior citizen who is not continuing curative treatment, your grandfather qualifies for the Hospice Medicare Benefit (HMB). The HMB covers nearly all the costs associated with his illness.

It is a myth that hospice is expensive. Most hospice patients qualify for one or more benefits that lighten their financial burdens. The Medicare benefit is open to all Americans in their time of need, regardless of their financial standings. We are fortunate in North Carolina to also have the option of a Medicaid Hospice Benefit; some states do not. Most private health plans also include provisions for hospice. Whether your grandfather is eligible for these benefits or not, however, hospices provide their services based on need, not the ability to pay.

You may wonder what "costs associated with his illness" means. Put simply, hospice would pay for medications related to his illness, medical equipment and supplies. As a lung cancer patient, he might need prescriptions like Albuterol, a special bed, or an oxygen concentrator; all would be covered by hospice. However, the HMB does not pay for prescriptions or equipment unrelated to his lung cancer. If he needs Nexium for his acid reflux, for example, he would still be responsible for that bill. (Other Medicare benefits may apply that would cover the unrelated medications or equipment; ask a social worker for more details.)

If you need more information on benefits and payment options, I suggest using the online Hospice Locator from the Carolinas Center for Hospice and End of Life Care: http://www.carolinasendoflifecare.org. An admissions or billing specialist will be able to help with your financial questions.

If this column made you think of someone in your family, please email me at asklinda@pchcv.org. I would love to be able to help. See you next week!

Can we call hospice without telling Dad?

Originally published in the Lincoln Tribune, May 27, 2008

Q: Dad was diagnosed with heart failure about a year ago, and he is not doing well. We want to call hospice, but he will panic if we do. Can we get hospice involved without him knowing?

A: You can't hide hospice from your father, but you can help him understand it's no reason for panic. Hospice care can improve and even lengthen his life.

Nevertheless, if he is afraid of hospice, the conversation will be a difficult one to begin. I suggest you discuss the situation first with family members he trusts. A "united front" might help make your case—and ease the burden on you.

Here are a few pointers for the conversation:

● Address his fears. Why does calling hospice make him panic? Is he afraid you have given up on him? Reassure him that you are with him every step of the way, and you want him to be free from pain or symptoms. If his panic comes from believing the end is near, reassure him that is not the case, and not the reason you are asking. Explain that he and the family will be best served if hospice is involved for a long period of time. The hospice care team can often help the patient and caregivers for weeks or months before a serious crisis occurs.

● Explain the benefits. Heart failure patients tell us their number one benefit has been the reduced number of trips to the emergency room. By now, your whole family may know about that "revolving door" to the ER. Your dad may be fine one week and back in the hospital the next. At my hospice, specially trained nurses in cardiac might help him to stay home—where he wants to be—and out of the hospital.

● Emphasize quality of life. Your father may imagine the hospice staff beginning bedside vigils, not helping him enjoy his grandchildren's visits. But if he is able to breathe freely, he may spend more time doing the things he wants to do. Every day is precious, and hospice can help him enjoy more of them.

Above all, remain calm and allow him to make his own choice. If he refuses, I would encourage you to try again when you feel the moment is right. Remind him that you love him and do not want to see him struggle.

Please send me your questions to asklinda@pchcv.org. See you next week!