You Can Help!

Hospice volunteers change lives

Hospice care teams consist of many people. Obviously, medial and psychological professionals are involved, but did you know that important roles are often filled by everyday people who volunteer for service? In an article for the West Virginia Gazette, Julie Robinson interviewed both employees and volunteers at a local hospice program to discover more about this topic. A quote:

Volunteers often underestimate the value of their own talents. One patient who started a cross-stitching project was distressed when she was physically unable to finish it. A volunteer who also cross-stitches sat with her and finished it.

"Our volunteers don't think their talents are a big deal, but they are to us," said Toni Bee, registered nurse and volunteer coordinator. "A young long-term cancer patient wanted to keep a journal. A volunteer visits and journals for her, taking down word for word what she says. The goal is to give it to her parents after she's gone."

Another long-term patient who was born and raised in Hungary wasn't eating well because she didn't like institutional cooking. Gates emailed volunteers and one responded. Her parents were from Hungary and she still had their recipes, which she used to prepare foods that comforted the patient and increased her appetite.

Patients are people, and as we know it can be difficult to predict every possible need a human being may have. Fortunately, those gaps can often be filled by the selfless work of volunteers.

Everyone has something to contribute, so call your local hospice program and tell them you'd like to help!

Hospice Nurses

Making a difference, every day

Hospice care nurses play an essential and active role in patient care. In a recent article for the Crystal Lake Tribune, staff writer Dawn Lassiter-Brueske recounted touching statements made by Illinois hospice nurses in honor of National Nurses Week:

“Upon learning that I am a hospice nurse, many people ask, “How can you do that kind of work? Isn’t it depressing?” On the contrary, I feel that there is so much that can be done to help people with terminal illness, that the rewards to all involved, patient, family, caregivers, can produce a great deal of relief and even satisfaction. To watch pain replaced by comfort, anxiety by relaxation, insomnia by sleep, these are the rewards hospice workers experience. We grieve,, yet the sense of loss is tempered by the satisfaction from knowing that we made a difference, giving them the best quality of life with the time they had left.” – Kimberly O’Neill-Lim, LPN

“Every day, every minute I have the honor of taking care of our patients and their families. I do this in memory of my own mother who was in hospice care.” – Linda Ranahan, RN

“As hospice nurses, we have the opportunity to help our patients in so many ways, from helping a dad coach his son’s soccer team from his wheelchair, to giving a woman a last view of her hometown with photos found online. It’s not just a clinical job. It’s so much more.” – Cathy Klingler, RN

“Having recently lost a loved one who was in hospice care, I experienced from the other side of the bed how it feels to be surrounded by a caring team . What I have always known in my head, I now know in my heart.” –Karla Guilfoil, RN

“For me, about 5 or 6 years ago, I would have to say ONE of my many memorable moments as a hospice nurse was when our team was able to facilitate a cross-country train trip to Seattle, Washington, for one of our patients and fulfill a dream he had of taking along his kids to visit his sister before his death. He did not think it would be possible, given his condition. But we made it happen; he arrived safely, was able to spend some time with his sister and make memories with his children. Almost every day, I think about how much of a difference we can all make, even in the little things.”—Helen Allums, RN

“My most memorable moments as a hospice nurse were my visits with Mr. P. He and his wife inherited his son’s dog, Sandy, who was a pit bull. During every single visit, Sandy laid on my patient’s and I had to do my assessment around her. It worked for everyone. “– Denise Sample, RN, BSN, Director of Clinical Services, HPNI

“We had a patient who was avid baseball fan. We suggested that the family sing “Take Me Out to the Ball Game” for him. The patient reached out, touched his grandchild’s hands and died with a smile on his face.” – Karen Gibboney, RN

“While the nursing team was caring for a stroke patient in our Woodstock inpatient unit, the patient, who previously could not communicate, was able to point and communicate to staff about “her angel.” When asked by staff about her “angel,” the patient turned her head and said how beautiful he was. Shortly after care had been provided, the patient’s speech returned to a slow, difficult to understand manner, but the patient still smiled.” – Daneen Gorski-Adams, RN

All of the money and technology in the world would be for naught without the giving natures and personal efforts of these men and women.

Our thanks to the many who contribute not only to our program at Hospice Care Corp, but world-wide!

Bereavement Groups

Helping each other

Bereavement groups can be a great help to those in the grieving process, especially after the often-painful loss of parents. By giving participants others to speak to about their experience, bereavement groups help to make a difficult time more bearable.

This quote from a Detroit Free Press article explains more of what these special groups do:

Bereavement support groups aim to help participants understand that crying is normal, grief takes time and death can actually change relationships for the better. Many survivors are forced to transition to a new adult identity. They often must be more confident in the decisions they make. They must be more responsible because they don't have Mom or Dad as a fallback.

Those are big changes to go through, and bereavement counselors say they want people to know they don't have to go on that journey alone.

Moving on doesn't mean forgetting, but continuing to live life. A standard offering at many hospitals and hospice care programs, bereavement groups are a great resource for this purpose, while helping participants honor those who've gone before.

Palliative Care Works

Hospital and palliative care can be a powerful combination

Palliative care involves the treatment not of diseases, but the symptoms that come with both them and certain treatments, as well as the mental health of patients and their loved ones. This quote from a BendBulletin article explains:

The goal of palliative care is simple: Improve the quality of life for people who are dealing with serious chronic or life-threatening medical problems. People with diseases such as cancer, congestive heart failure, HIV/AIDS and kidney failure often have tremendous problems with pain, shortness of breath, fatigue and nausea, among other symptoms. Especially in a busy hospital, it’s challenging to keep these patients comfortable and pain-free and to help them deal with the difficult medical and personal decisions they may face. That’s where palliative care comes in.

More than fifty percent of major hospitals now feature their own palliative care programs, and where they don't the gap is often filled by charity or not for profit groups.

Not only do these programs help make patients more comfortable, they save lives. It's known now that mental health plays a major role in our physical recovery process, and the potent combination of pain/symptom management and counseling, spiritual or otherwise, ensures there is less trouble on that end so that the doctor's efforts on the physical side can be as beneficial as possible.

Help the Grieving

Tips for those who want to lend a hand

Caring.com is an excellent resource for end-of-life care information, and frequently puts out articles like this one, by senior editor Paula Spencer, that seek to help anyone encountering the hard questions that inevitably come.

5 Simple Ways on How to Help Someone Who's Grieving  

by Paula Spencer

Feeling helpless about how to help a friend or family member who's mourning a loss? Small acts speak volumes. Here's how to help someone who's grieving, in simple, thoughtful ways:

1. Listen.
 
There's no need to rush in with words of comfort, especially if they don't come naturally.

Better: Simply make a space, with your companionable silence, for the bereaved to express herself if she chooses.

2. Don't hurry an emotional moment.
A common impulse when someone gets choked up with grief is to change the subject and try to shift to safer emotional ground.

Better: See the moment through. Pause. Offer a hug. Share your own comment about the person who died, if it feels appropriate.

3. Talk about the person who died.

Don't avoid mentioning the person who died; he or she is still very much in the minds of grieving family and friends.

Better: Reminisce or mention how the person inspired you or made you happy. When they naturally come to mind, don't be afraid to say things like, "Wouldn't Susan have loved these flowers?" or, "I can just hear Bill saying, 'It's a great day for golf!'"

4. Stick to honesty over platitudes.

There's no "right" thing to say to a survivor, but there are plenty of wrong things, like these 10 things never to say to someone who's grieving.

Better: If you're tongue-tied, acknowledge it. Try, "I don't know what to say. Please know I'm thinking about you." Or, "I can't imagine what each day is like for you now. I'm here for you."

5. Don't ask how you can help; just do.

Asking even simple questions ("Do you want me to pick up milk for you?" "What do you like to eat?") puts an added burden on the bereaved. Especially soon after a death, someone who's mourning may be physically and emotionally incapable of such decision making.

Better: Simply step in when you see a need: Furnish a meal (ready to eat or freeze, in disposable containers that don't need to be returned), organize regular meal delivery, pick up milk or eggs or fresh bread when you're at the store and leave them in a cooler on the porch, mow the lawn, take care of the car pool, stop by to walk and feed the dog. Think of essential tasks that can be handled unobtrusively.

Therapy Rabbits

More cuddly creatures joining animal therapy forces

Ninety-year-old Jean Doan beamed as little Ruby settled into her lap, and she smiled.

It was exactly the reaction patient care nurse Sandy Dowling had hoped to see.

"So many of our patients are elderly, and they can be afraid of cats and dogs," she said. "Rabbits tend to be more calm, and they usually are good about staying still."

Ruby, an 8-week-old rabbit, has joined the team at Compassionate Care Hospice, based in Bartow.

This quote, from a Newschief.com article, tells of an exciting new trend in patient care. While animal therapy has been around for many years, dogs make up the overwhelming majority of certified animals, with a small smattering of cats as well. Now, thanks to their naturally calm and still manner and the fact that patients are much less likely to be allergic, rabbits are bursting onto the scene, creating smiles and reducing stress across the country.

Improving End of Life Care

Getting the care you want and need

Hospice care is playing a primary role in allowing people to get the type of end of life care that they desire. Here, we have an article from Statesman.com, that uses information from the Austin, TX area to demonstrate this fact:

Sometime ago, early in my practice in Austin, a patient, well-aware she was dying of her cancer, talked to me about how she wanted to die. She would be looking out at the woods behind her house with her family near, still sensing the pulse of life around her. Her wishes were realized, and we can say she "died in place."

As important as it is to complete our wishes about the circumstances of our death, this often does not happen. Circumstances conspire to impede our wishes, and we die in the hospital or in pain, or more often than necessary, both.

Yet, as we shall see, it does not have to be this way.

That we have preferences about how we die is not in doubt. We have seen this in how we describe our deaths.

On a day last summer (Aug. 4, 2010) the following appeared on separate patients in the American-Statesman in the obituaries: " were at her side when she died ," " died peacefully with his family by his side ," " passed peacefully ," " passed away at his home ," and " passed away peacefully at home."

These sentiments are supported by a national survey of over 2,500 Medicare-age patients that indicated 86 percent wanted to die at home, only 9 percent in the hospital.

Yet we know that for cancer patients specifically, this is not how things play out.

A recent report of the Dartmouth Atlas Project (Nov. 16, 2010) showed that 29 percent of Medicare-age patients dying of cancer die in the hospital; 24 percent were admitted to the intensive care unit (ICU) in the last month of life.

Additional indicators of aggressive care were identified: chemotherapy in the last two weeks of life, low hospice admission rates and hospice admissions that occurred three days or less before death.

Moreover, project data indicate that aggressive care in these cancer patients does not mean better care.

A recent paper by a team led by Dr. Jennifer Temel of Massachusetts General Hospital reinforced this point.

In this study of lung cancer patients, one group received standard care, and the other group received standard care plus consultation directed toward symptom control and quality of life. This latter group received less aggressive care with fewer hospitalizations and more hospice enrollments. Notably, in this group, symptoms were better controlled, and family satisfaction was better. And these patients lived at least as long.

Cancer patients in Austin generally receive less aggressive care at the end of their lives than those in other areas in the country.

In Austin, 23 percent of cancer patients die in the hospital. Hospital days in the last 30 days of life are 4.4 with a national mean of 5.1; days enrolled on hospice are 10.6 with a national mean of 8.7. However, chemotherapy in the last week of life was 7.8 percent of patients with a national mean of 6 percent.

Patients in our own oncology practice also received less aggressive treatment than national norms.

Seventy-five percent of patients were enrolled in hospice at the time of death, with 58 percent dying at home, 28 percent dying at Hospice Austin at Christopher House. Over 80 percent of these patients had pain well controlled.

For patients not on hospice who died in the hospital, the last measurement indicated poorly controlled pain in 37.5 percent. A hospice enrollment of three days or less was associated with more severe pain levels.

The critical issue in this tension between wished-for and actual place of death appears to be communication.

A study of oncologists done in 2002 indicated that 37 percent discussed resuscitation orders at the time of diagnosis, 41 percent only when treatment was not working, 10 percent just before hospice referral and 12 percent a few days or hours before death. In contrast, 90 percent of patients want to talk about advance care planning at the time of diagnosis and want to discuss this while they are still well.

We know, from a recent study by a team led by Dr. Alexi Wright of Harvard Medical School, that if this conversation does not occur at all, patients are more likely to be admitted to the ICU and less likely to receive hospice care, while their families are more likely to have regret and a higher risk of depressive disorders.

The cancer community has recognized these shortcomings, and medical schools now more regularly offer courses in communication. There are also programs, such as Respecting Choices and Oncotalk, available to practicing professionals.