Wherever home is: hospice in the nursing home

Originally published in the Lincoln Tribune, May 20, 2008

Q: My grandmother is in a nursing home, and her health has taken a turn for the worse. Her doctor has talked to us about hospice, but I thought that was only for people at home. What would hospice do in the nursing home?

A: Hospice complements the care your grandmother is already receiving. Hospice is not a place; it is a set of services that comes to you. Hospice team members make extra visits to help control pain and symptoms, enhance daily personal care and hygiene, discuss spiritual needs, and more. They help ease the burden of family caregivers as well as the busy nursing facility staff.

Each care team member would offer their expertise to your grandmother and her staff at the facility. For example, a hospice nurse might help the staff with different medicines or therapies for managing a breathing problem. On-call hospice nurses are available around the clock when stressed staffers need them, too. Social workers can help connect your family with resources that might help your grandmother. Volunteers and chaplains could provide social and spiritual interaction. A nurse's assistant would also provide personal care visits to supplement the care provided by the facility's staff, meaning more showers, hairdos, or maybe even a manicure or two! The care team seeks to fill your grandmother's needs, so it may be a good idea to make a list of questions and concerns for the hospice nurse during the admission process.

Hospice could also mean relief for the family financially. As a senior citizen in need of special healthcare, your grandmother probably qualifies for the Hospice Medicare Benefit, which would pay for medications, medical equipment, and supplies related to her illness. The fact that the doctor has mentioned hospice suggests that your grandmother is already eligible. Don't be afraid to ask the facility social worker about payment options.

I am sure your grandmother is in the best of care. Having worked in the nursing facility, hospital, home health, and hospice fields here over the last 26 years, I know Lincoln County has some of the best health care facilities of anywhere in the state. We recently celebrated National Nursing Home Week, and I would like to take the opportunity to thank all the facility professionals throughout Lincoln County that provide the very best care, every day.

Readers, don't be afraid to send questions about your loved ones to asklinda@pchcv.org; your name and email will be kept completely confidential. See you next week!

Volunteers: the heart of hospice

Originally published in the Lincoln Tribune, May 13, 2008

Q: One of the ladies in my church just became a hospice volunteer. What do volunteers actually do?

A: Volunteers support the patient and family on a personal level — spending time with the patient, helping with small tasks, or "just being there." In the same way the nurses, doctors, and CNA's provide medical care or the chaplains provide spiritual guidance, volunteers provide much-needed social interaction at a time when patients may feel isolated from others.

The friendship of a volunteer can divert patients from their day-to-day worries. Depending on the day and the mood, volunteers might read aloud, bring DVD's to watch, play music, or just spend time chatting with the patient. Some might become pen pals or email pals. Volunteers are often matched to patients who have similar interests or backgrounds; for example, your church friend might be matched with someone of the same faith, or someone who shares her hobbies.

Volunteers also give valuable relief to caregivers. Anyone who has gone through a loved one's health crisis knows how valuable a little help can be—and how hard it sometimes is to come by. The one hour that the volunteer sits with the patient might allow a caregiver to pick up prescriptions, go grocery shopping, head to a parent-teacher conference, or just have a relaxing dinner or cup of coffee. Many families I have worked with have found their volunteers to be an invaluable part of their loved one's care team.

Also, few people realize that hospices are required to have volunteers in order to attain Medicare reimbursement. A minimum of five percent of total hours worked each year must come from volunteers. Without volunteers, hospices would be unable to operate. They are indeed at the heart of hospice work!

If you are interested in being a Patient Care Volunteer, I urge you to contact a hospice today. Visit www.volunteermatch.org to find volunteer opportunities in your area—search the site with a keyword of "hospice" to show what is available at hospices near your home. Or find a nearby hospice via the Carolinas Center for Hospice and End of Life Care's online Hospice Locator at http://www.carolinasendoflifecare.org.

See you next week! Please keep sending me your questions!

Tell legislators to protect Hospice!

Originally published in the Lincoln Tribune, May 6, 2008

Q: I want to support hospice, but I don't have time to volunteer. Is there anything else I can do?

A: Write your Representative and Senators! After you vote in the primaries today, take about five minutes to submit a letter to your elected representatives via the National Hospice and Palliative Care Organization's website, www.nhpco.org.

There has never been a better time to speak out for hospice. The most recent federal budget proposal contains several cuts in the hospice reimbursement structure. Even a small cut in those rates could have a devastating effect on hospices nationwide. Since about 80-85% of hospice revenue comes from Medicare, a reduction in reimbursement rates could cause hospices to make cutbacks or even to accept fewer patients.

Hospice has attracted more attention in the budget over the last few years because it has grown to be a bigger piece of the Medicare pie. Last year, hospice programs across the country served 1.3 million patients and families, and Hospice Medicare Benefit expenditures were higher than ever before. However, hospice care actually saves Medicare money. A recent independent Duke University study clearly demonstrated that on average, hospice saves Medicare more than $2,300 per patient: “Given that hospice has been widely demonstrated to improve quality of life of patients and family members…the Medicare program appears to have a rare situation whereby something that improves quality of life also appears to reduce costs.”

It's important to speak up now so Congress protects hospice from budget cuts in upcoming legislation. If you have never written your Senator or Representative, the NHPCO website makes it easy. Visit www.nhpco.org and click the link under "Help Protect Hospice Rates" in the Breaking News section. The new page is called the Legislative Alert Center. In the green box under "Help Protect the Hospice Reimbursement Rate!", click the button to go to a form that walks you through the letter-writing process. It only takes about five minutes.

I can't stress enough the importance of these emails. Legislators often judge what the most urgent issues are by the number of emails they receive on a given topic. Help keep hospice at the top of their lists!

When our children grieve

Originally published in the Lincoln Tribune, Apr. 29, 2008

This week's question is a very personal one.

"Did he talk at all?"

I worked at a grief camp this weekend for children who had lost a loved one. The woman who asked me this question so hesitantly was worried about her grandson, who had lost his mother.

Children are often the most overwhelmed by a loss. Unfortunately, they are often the family members we feel the least-equipped to help. Both adults and children can have the same responses to grief: anger, guilt, depression, shock, and disbelief. Usually well-behaved kids might develop a temper, stop doing their homework, or lose interest in pastimes they once loved. Some of them, like the woman's grandson, might stop talking and retreat to an inner world.

Counseling can mean the difference between internalizing painful feelings that can fester through adolescence, or understanding those emotions and healing. Kids' counseling can be very different than the couch-and-conversation idea many of us have when we think of a "session." Activities are often used, like specially-written board games, workbooks, or art therapy projects. Through gentle lessons, children learn that their lost loved ones will always be a part of their lives. They learn to heal, and hope, and love in new ways.

I am a strong advocate for counseling, no matter where you find it. Lincoln County is home to dozens of licensed counselors and clergy members who work with children or the whole family. School counselors are a wonderful resource for grieving kids, also. Last but not least, many hospices offer support groups or counseling sessions for children at no charge -- whether the person they lost was a hospice patient or not. If you are concerned about a child in your family, I suggest calling a hospice first to find out what help may be available.

Healing takes time. Grief can overwhelm our needs to eat, or sleep, even to speak. But with support, kindness, and compassion, our little ones can heal.

I was glad to be the one to answer the grandmother's question at the grief camp. As I watched her grandson laugh and play with his new friend from the support group, I had to smile. "Yes, he did. He got to be a kid again today," I said. "He's going to be just fine, in time."

My cousin has cancer. How can I help?

Originally published in the Lincoln Tribune, Apr. 22, 2008

Q: My cousin has been diagnosed with an advanced cancer. I would like to help her, but I don't know what she needs right now. What can I do?

A: Talk to them about hospice and how it could help with your cousin's situation. Although modern hospices serve patients with a variety of illnesses, hospices were founded specifically to serve cancer patients like your cousin. Is she often tired, or in pain? Is she going back and forth to the hospital and would rather stay home? What about her caregiver -- is he or she overwhelmed with caring for your cousin on top of work and all those other family responsibilities? If any of your answers are "yes," hospice may be able to ease the strain on your cousin and the whole family.

Mentioning hospice may seem daunting if you do not have a close relationship with your cousin. Talking with healthy loved ones about their healthcare wishes can be difficult (see my Apr. 15 column); discussing hospice with someone who has cancer can be even more so. Keep in mind that the best gift you can give your family is to have someone who understands their struggle. Speak frankly with them about what kinds of support they may need -- like assistance with your cousin's medical care or helping her with the tasks of daily living, like bathing or dressing. They may even be looking for spiritual guidance. A hospice care team can help with all of those issues and more, such as paying for medications related to the illness, medical equipment and supplies, all of which reduce the stress on your cousin and the whole family.

Your cousin's doctor can refer you to a good hospice. You might also contact the county health department or stop by a community health fair. If you prefer to look online, the Carolinas Center for Hospice and End of Life Care has an excellent Hospice Locator at http://www.carolinasendoflifecare.org. Whichever route you choose, I hope you and your family are able to find the support you need in the days ahead.

Readers, don't be afraid to send questions about your loved ones to asklinda@pchcv.org; your name and email will be kept completely confidential. See you next week!

Advance Directives: a gift to your whole family

Originally published in the Lincoln Tribune, Apr. 15, 2008

Today, a question for all my readers: if you were critically injured this afternoon and lapsed into a coma, would your loved ones know how you would want to be treated?

Wednesday, April 16 is National Healthcare Decisions Day. The goal of the day is to help all adults understand the benefit of discussing their health care choices with their loved ones. Unfortunately, when the worst occurs, not everyone is able to speak for themselves. By committing your wishes to paper, you spare your loved ones the heartache of trying to make guesses about what you would have wanted.

Your decisions can be written down in a set of documents called Advance Directives. They come in two forms. A Healthcare Power of Attorney formally recognizes the person that you select to be the voice for your healthcare decisions if you cannot speak for yourself. A Living Will documents what kinds of medical treatments (including artificial nutrition or hydration) you would or would not want at the end of your life.

It's difficult to begin these discussions, and you might feel uncomfortable as you begin the process. But committing your wishes to paper is a gift you give your whole family—a few moments going through your Directives now could prevent months or years of heartbreak for all your loved ones. Clear, recorded instructions can stop arguments before they start, sparing your spouse, parents or children from needless conflict.

I would like to encourage everyone to discuss your health care options and wishes with your loved ones, and then document your decisions in an Advance Directive. You can download all the forms for free at www.nationalhealthcaredecisionsday.org. Often, hospice social workers can answer questions and help you complete your Directives; call your hospice today to find what help is available.

I look forward to answering your questions in future columns. Email me at asklinda@pchcv.org!

Dad's a fighter. Why call hospice?

Q: Dad has been diagnosed with cancer, but he's always been a fighter and I think he'll pull through. Why would we call hospice?

A: Even if Dad has a good prognosis, he's going to need a lot of help in the days ahead. Serious illnesses and their treatments can be unpredictable. Chemotherapy in particular has several side effects that can be difficult. A hospice team can help your father throughout his treatment, not just at the eleventh hour.

Some highly advanced hospices also provide a special kind of medicine called palliative care. The goal of palliative care is to lessen the pain, symptoms and stress that a serious illness like cancer can bring. The best-known type of palliative medicine is hospice, which cares for people in the last stages of serious illnesses. If Dad is not in the last stages but just beginning his treatments, palliative care can still be involved.

Chemotherapy in particular is one cure that can seem worse than the disease. Common side effects are nausea, vomiting, pain, and fatigue. A palliative care physician or hospice team would work with Dad's doctor to find the right medications to help ease those discomforts. Chemo can also seem overwhelming or confusing, but a palliative care nurse practitioner or hospice nurse would explain to Dad and the family what they can expect with each treatment. Advice from a calm professional can help remove a lot of fears.

Perhaps most importantly, patients who choose hospice live longer than those who forgo it. Contacting a hospice early in your diagnosis can mean more time and better quality of life in the long run. A March 2007 study in the Journal of Pain and Symptom Management showed that patients with hospice care lived 29 days longer than those who went without it—especially those with lung cancer, pancreatic cancer, and heart failure.

Join me for a special column next week about National Healthcare Decisions Day. Please send your questions to asklinda@pchcv.org!

Managing Mom's pain without overmedicating

Originally published in the Lincoln Tribune, Apr. 1, 2008

A common question from the hospital:

Q: Mom is in a lot of pain, but we don't want her to sleep all the time if she has pain medicine. Is there an option that would make her comfortable and allow us to spend time with her?

A: There are many new options in pain management, some that don't even involve drugs. A combination of medication and complimentary therapies are helping patients find relief without some of the side effects we traditionally associate with pain medicine.

When you are suffering, your whole life is affected—physically, psychologically, socially, and spiritually. Pain might prevent you from climbing the stairs or riding to church. That absence might cause you to lose track of friends or family. If it grows worse, the pain might keep you even from talking. Pain affects a lot more than the body part in which it resides.

Medicines can minimize the pain enough to allow Mom to participate in daily activities without knocking her out all the time. Dozens of new medications have become available, even in the last five years, and many have fewer side effects than you would expect. The image of the patient who sleeps all the time because of her medications is fading. Instead, many people who suffer from chronic pain or pain from serious illnesses can take medications while enjoying fuller, more active lives.

Also, there are many new methods to help manage pain that don't involve drugs at all. Complimentary therapies, like massage or aromatherapy, have been shown to relieve pain for patients suffering from many ailments. Relaxation stops pain from increasing by lessening anxiety. Distraction can be a powerful tool, also; watching a movie, listening to music, or reading a book may take Mom's focus away from her pain for the moment. For patients with serious illnesses, hospice volunteers provide a welcome break in a person's daily routine with their visits to check in, read aloud, help with small tasks, or just to chat.

Finally, those with serious illnesses should keep in mind that hospice can work with the patient's physician to find the medications most effective for pain control, as well as enhancing quality of life.

How are your loved ones doing? Is there something more you think could be done for them? Please write me with your questions! Email me at asklinda@pchcv.org.

When hopes shrink: Helping your loved one with depression

Originally published in the Lincoln Tribune, Mar. 25, 2008

This is a question I was once asked at church:

Q: The doctor told my husband there is nothing more they could do. He's gotten depressed and doesn't want to do anything. I don't know how to help him. What should I do?

A: Act with patience and love. Hope can seem to disappear during the dark times, but it renews itself through acts of caring.

When your loved one starts feeling bad, his hopes begin to shrink. Maybe he stops planning a lengthy RV trip and instead only leaves the house for a few dinners out. Then he stops going out at all. Maybe home isn't even an option—maybe he's moved to a nursing facility. The little losses mean less to look forward to, and hope for, each day.

Whether you have cancer, heart failure, kidney disease or nothing at all, our lives all circle the same hopes: we want days without pain, peaceful sleep, and the ability to spend our waking hours the way we choose. Diseases get in the way of those basic needs. As the disease chips away at our daily activities, it can be easy to become depressed. Especially if you hear that most devastating of sentences: "There's nothing more we can do."

I would tell anyone who sees their loved one suffering the same thing I told my church friend that day: Take some time each day to talk to him about his feelings. Your loved one may feel overwhelmed or helpless in the face of his disease. He needs love and compassion. Be patient and listen to what he wants to share with you. He is experiencing many losses right now, especially the loss of control of his life.

Listening to what your loved one has to say—and accepting it—is very important for both people. I have often told my patients and friends that you can't talk someone out of their feelings! But through listening, you can support them in their despair and help them find hope in their grief.

You as the caregiver, too, need patience and love. Hospice social workers are there to comfort both people during a difficult time. Remember, you cannot help your loved one if you don't take care of yourself first.

If you have questions about helping a loved one through a difficult time, please write me! Send your questions to asklinda@pchcv.org. See you next week!

Ask your doctor about hospice; ask hospice about your doctor

Originally published in the Lincoln Tribune, Mar. 11, 2008

Q: Can I call hospice if I haven't talked to my doctor about it?

A: Yes. Maybe you wanted to ask the doctor, but you were afraid. Maybe you thought about it after you got home from your last appointment. Or maybe your doctor is hesitant to ask you. Whether you had the conversation with your doctor or not, hospices welcome the chance to talk to you.

Doctor's visits can be overwhelming, especially if you have a serious illness. First you get your height checked, then your weight, then blood pressure, then temperature, from one thing to the next. It's a lot of activity—and you're already not feeling so good, that's why you're there! By the time the doctor comes, you may not remember everything you wanted to ask. Hospice can help fill that gap.

Most hospices have a nurse or social worker who can help answer your questions. (You can usually get someone on the phone by asking for the Admissions department.) You might want to write your questions down so you don't forget them during the phone call. When you have a serious illness—cancer, heart failure, lung disease, etc.—you need all the answers you can get! A hospice professional can give you a compassionate, objective view of your situation and what might be best.

The hospice can also call your doctor and take care of the conversation—and the paperwork!—for you. It's not unusual for a hospice to call your doctor for an order, instead of your doc calling the hospice with a referral.

Next week, we'll look at how hospices help people find new hope during the most difficult of times. And if you have questions about how hospice might help yourself or a loved one, please write me! Send your questions to asklinda@pchcv.org.

Concerned? Call hospice ASAP

Originally published in the Lincoln Tribune, Mar. 4, 2008

This might not be the most commonly asked question, but I bet it's the most thought about:

Q: My loved one has taken a turn for the worse. When should we call hospice?

A: Yesterday! The #1 comment on my organization's family surveys is, "I wish we'd known about hospice sooner." If you think that hospice might be appropriate for your loved one, chances are he or she could already be receiving comforting services. You should call the first time the thought crosses your mind.

When your special person finally receives the word from the doctor, there may seem to be no reason to call. Now you know what's caused the problems; your loved one has prescriptions or appointments for treatments to fight it. No need to call hospice yet, right?

Wrong. From hospice has sprung an entirely new kind of medical care, called palliative care. Palliative care makes the patient comfortable, either during treatments or once those treatments are not working. Anyone can request a palliative care consultation, even as early as the visit where you hear your diagnosis. Palliative care treats the issues that might have sent you to the doctor in the first place, or the issues that might develop from during treatment (nausea, incontinence, swelling, etc.).

If you don't have a lot of symptoms, you still have questions. On the drive home from the doctor's office, everyone comes up with "What if?"s they didn't ask during those brief moments in Exam Room B. During a palliative care consultation, a doctor- or nurse-consultant can spend time walking you through all those questions that keep you awake at 3 A.M.

Calling sooner is better for the family, too. If the patient begins with palliative care, caregivers have the relief of knowing, for example, that Mom or Dad is no longer in pain, and has a plan of action for the future. If hospice is involved, social workers, chaplains, volunteers, and more help the family with the dozens of problems that can pop up during a health crisis. And all hospices are required to provide counseling and support for survivors for 13 months after their loved one's passing.

If this answer resonated with you, I hope you will call a hospice today. Don't forget to send me your questions, too!

Grandpa and toddler: hospice for all ages

Originally published in the Lincoln Tribune, Feb. 26, 2008

This week I continue with another of the most common questions about hospice. Please send your questions to asklinda@pchcv.org for future columns!

Q: Is hospice only for the elderly?

A: Hospice is for anyone who needs it, regardless of age. Last year, Joe, a 71-year-old veteran from Lincolnton, moved into our Hospice House. Faith, a year-old toddler, became his "neighbor" in the next room. Faith never failed to bring a smile to Joe's face, and Joe loved to be able to hold her and talk to her. He was so devoted to the girl that Faith's mother, Luanne, called him Faith's "adopted grandpa."

Like most people, Joe would never have expected a curly-haired toddler to move in next door. Their unlikely friendship showed me how important it is for hospices to reach the young, the old, and everyone in between.

As you might expect, the majority of hospice patients are elderly. In 2006, the National Hospice and Palliative Care Organization (NHPCO) reported that about 82% of hospice patients are 65 and older. But that also means roughly one out of six patients is not even old enough to retire. One out of six of the rooms at our Hospice House might have a toddler, teenager, college student, or fortysomething.

One huge priority for both both young and old patients is setting and achieving goals. Goals can be small or very involved. A senior citizen like Joe might want to track down and reconnect with old friends; a bed-bound teenager might want to attend her senior prom. Both might want something as seemingly unimportant as being able to eat dessert with every meal. Hospice nurses, social workers, volunteers and other staff work hard to find the resources and solutions that make these goals come true for every person. While not every goal is always feasible (vacationing in Mexico, running a marathon), I have seen hospice teams be very creative with what they have to work with (throwing a Mexican fiesta in a patient's room, going for daily walks).

Next week I'll tell you the #1 comment on our family surveys. Please send me your questions to answer in future columns, too!

Hospice helps all diagnoses, not just cancer

Originally published in the Lincoln Tribune, Feb. 19, 2008

As I begin our second column in the Tribune, I'd like to answer one of the most common questions about hospice. Please send your questions to asklinda@pchcv.org for future columns!

Q: Does hospice help people with diseases other than cancer?

A: Yes. Although many hospices were founded to help care for cancer patients, they are not limited to one disease. Today's hospices welcome people with any serious diagnosis: heart disease, kidney failure, Alzheimer's, AIDS, multiple sclerosis, lupus, leukemia, and dozens more. And many hospices are developing special programs of care for the most common diseases in America, like heart failure.

At my hospice, less than half the patients have cancer. I think that lower number comes from to two things. First, we are blessed to live in an age where we know more about cancer than ever before. Every year, we discover new and better treatments. People are living longer with cancer—or beating it entirely!

Second, since the 1990's there has been a national movement among hospices to open the doors wide to everyone who needs our help. Thousands of organizations have reached out to cardiologists, dialysis clinics, even newborn intensive care units to try to reach people in need.

No matter the diagnosis, the hospice care team — nurses, CNA's, social workers, counselors, and others — adapts their care to each person. Every disease is different, and every person's experience with a disease will be, too. The staff's top priority will be to lessen the patient's pain and/or symptoms. For example, a nurse working with someone with heart disease might focus on reducing chest pain, while an Alzheimer's patient might not have much pain but could need help with anxiety or restlessness.

By the way, hospices use every possible type of therapy to help lessen pain and symptoms — not just prescription drugs and medical equipment. Massage therapy is becoming much more common, as well as aromatherapy, music therapy, and pet therapy. Depending on the diagnosis, the hospice might also include diet or lifestyle coaching. Be sure to ask your hospice what additional therapies they offer.

Next week, I'll introduce you to two friends who once lived at our Hospice House—a 71-year-old grandpa and an 18-month-old girl. And don't forget to send me your questions!

Three things everyone should know about hospice

Originally published in the Lincoln Tribune, February 12, 2008

We've all been there: someone in your family gets sick. And stays that way. After rounds of tests over the course of weeks or months, you hear the terrible news: it's cancer. Or kidney failure. Or heart disease. No matter what the diagnosis is, your family is in crisis: "What now?"

As a nurse for over 20 years, I can tell you the answer is to call a hospice. Hospices are a special kind of healthcare organization. They help people with serious illnesses cope with the challenges of daily life, for as long as possible. All hospices provide a special "care team" of nurses, CNA's, social workers, and more who come to your home and care for your special needs. Their goal is to make you as comfortable and symptom-free as possible.

Hospice is a big concept and hard to condense into a few words. But there are three things everyone should know about hospice — long before it's needed.

Hospice is for everyone. People who choose hospice are young, old, and everywhere in between. They might have cancer, Alzheimer's, AIDS, kidney failure, heart disease, or any other serious illness. They might rent small apartments or live by the lake. They are every color and creed. Anyone with a serious illness can ask for hospice.

Hospice helps the patient — and the whole family. Health crises affect so many lives around the sick person. Hospices not only provide medical care to the patient, they provide support from social workers, counselors, and chaplains to the whole family. Not sure what to put on those 'advanced care planning' forms? A social worker will be there to help you. Need a sympathetic ear? The hospice chaplain is there to listen. The team members can differ from one hospice to another, so it's important to ask what services each organization offers.

Hospice can help much earlier than you might think. A March 2007 study in the Journal of Pain and Symptom Management showed that people who chose hospice lived longer than those who didn't. The care team can get involved sometimes as early as the day you hear the diagnosis. Calling hospice sooner means more time with pain under control, symptoms quieted, and a better quality of life.

I welcome questions from you, the reader, about any part of hospice care. Remember: if you think hospice could help, it's time to call. See you next week!

Welcome to my blog!

Thank you for visiting my Ask a Hospice Nurse blog! You can read my columns each week in the Lincoln Tribune. The new issue comes out each Tuesday. Look for it in stores and offices all over Lincoln County!

I plan to archive all my columns here; check back for new posts. If you have questions about hospice care, please email me at asklinda@pchcv.org. I will keep your name, details and email completely confidential.

Thank you for reading!

--Linda