A Group Effort

Hospice combines the best in patient care

Hospice care is truly a multidisciplinary practice, taking the efforts of many, from trained professionals to compassionate volunteers, and combining it all to enable patients and their families to truly enjoy life for as long as possible. This quote from a guest commentary in Colorado's Daily Camera goes into more detail:

Truth be told, pain and symptom management -- though critical -- is merely one aspect of the care hospice provides to terminally ill individuals and their families. Those who choose hospice care also receive the emotional and spiritual support they need to fully live every day that remains at home, in comfort and with dignity, surrounded by their loved ones. In fact, through the expert and compassionate care of an interdisciplinary team (including a hospice and palliative care physician, registered nurse, certified nursing assistant, social worker, chaplain, and grief counselor) and a customized care plan based on respect for each individual's choices and goals, hospice helps patients and families find peace and meaning, strengthen personal relationships, and complete and celebrate life. All of which eases the burden for patients and their loved ones at what is understandably a difficult time of heightened family dynamics and differences.

Nobody wants to worry when they know that time is limited, and that's exactly what hospice takes care of. With all needs covered, those in hospice care are left to fully engage their friends and loved ones or participate in favorite activities, making the very best of what they have.

Hits for Hospice 2011

Charity tournament a "hit" with volunteers and participants

from WDTV 5 News:



Hospice Care held its second annual Hits for Hospice softball tournament at White Park in Morgantown Saturday.

Ten teams were at the all day event, which benefits Hospice Care.

More then 100 volunteers, players, and fans from around the community came to the co-ed tournament to raise money.

The non-profit organization relies on events like this to stay open.

Hospice Care officials said these tournaments help to get the community together and stay involved. "We're just gathering momentum, and people enjoy playing to raise money for patient care," said Cynthia Woodyard of Hospice Care.

Folks traveled from as far as Elkins and Pennsylvania to play in the tournament.

Our thanks to those who came out and volunteered, or tried their hand in the annual Hits for Hospice tournament! It's events like these that allow us to continue to provide quality hospice care to individuals throughout West Virginia!

You can find more information about upcoming events at the Hospice Care website, here.

Social Media

Changing how we connect

Whether your objective is marketing, public relations, or customer service, social media is the way to go these days. While the tech and business worlds have embraced this new way of communication, the medical field, especially those focused on end-of-life care, have been lagging behind.

Efforts like The GroundSwell Project are seeking to change this. In a recent blog post, founder and director Kerrie Noonan described how GroundSwell is using social media to promote what they call, "death literacy:"

It was with great interest that I attended the Palliative Care Australia stakeholders’ forum in Canberra recently where we talked about strategies that encourage increased community awareness about palliative care.

This includes amplifying community conversation and knowledge about death and dying. Social media was a big part of this discussion, and it was wonderful to see this on the agenda because whilst there is a lively international community of palliative care tweeple and social media communicators, on a national level we have yet to fully explore the potential of new media to share our stories.

I was invited to the forum as the director of a not-for-profit health promotion organisation, The GroundSwell Project. We use both traditional arts and digital media to promote resilience and community well-being at end-of-life and through bereavement. We collaborate with schools, palliative and aged care organisations to run our arts programs and to encourage awareness about what we call ‘death literacy’ in the community.

As a health-promotion organisation our work is underpinned by a public health and social approach to death, dying and bereavement, and social media is our preferred platform for communicating about our work.

We have embraced Facebook, Flickr, Youtube, Twitter and WordPress to share stories about our projects. For instance, news about our current high school drama project on organ donation is regularly posted on our main website and can also be followed via a dedicated project website. At the same time all the participants are actively involved in sharing via a closed Facebook group. Photos and videos are also integrated across our websites thanks to Flickr and YouTube. Everyone in the project, young and old, is involved in sharing online.

Education is always one of the highest priorities of palliative and hospice care programs, and what better way than through free mediums that allow messages to reach thousands of eyes instantly? Your social media efforts don't have to start out big, but a blog, Twitter account, and a few carefully selected YouTube video postings can draw attention to the many services offered and the often touching results.

End-of-life Education

New law raises debate

I shouldn’t be surprised when doctors object to laws telling them how to practice medicine, as does New York State’s new Palliative Care Information Act — not surprised, but in this instance, distressed.

Vehemently opposed by the Medical Society of the State of New York, the law passed last summer by a two-thirds majority of the Legislature and took effect in February. The legislation was written in collaboration with Compassion and Choices of New York, an organization that advocates for informed choices and greater physical and emotional comfort at the end of life.

The act, which I discussed in this column last August, states that when patients are found to have a terminal illness or condition, health care practitioners must offer to provide information and counseling about appropriate palliative care and end-of-life options. Patients or their surrogates are entirely at liberty to refuse an offer to discuss these options.

California passed a similar law in 2009, and other states are considering them. These measures promise to reduce the cost of care at the end of life, as well as the suffering often associated with it; palliative care is meant to reduce the severity of disease symptoms, pain and stress. 

This quote, from a New York Times article, brings to light a battle currently being fought across the U.S. While many doctors do voluntarily share end-of-life care information with their patients, a disturbing amount still fail to have this conversation until it's too late to make a choice. While the doctor's society is officially protesting the fact that they are "forced" to have these talks, few are willing to argue the fact information about palliative and hospice care is often glossed over or ignored when it would be in the patient's best interest to be informed.

Making Choices Easier

New approach enables more informed decisions

Talking about terminal illness is one of the hardest things a doctor and patient have to do together. Besides the obvious difficulties of discussing the end of life, most people lack a clear understanding of just what the different types of treatment available entail.

To assist with that issue, a new video, described here in a quote from a CNN article, is being used across the country to educate and inform patients before they make these important decisions.

"Videos help to broach a difficult topic and to make it more real and less abstract for patients and their loved ones," says Dr. Angelo Volandes of Massachusetts General Hospital.

The videos cover a variety of illnesses: cancer, heart disease, and dementia. There are typically three options. The first - prolong life at any cost - including breathing tubes and CPR. The second offers only medical treatment, like chemotherapy and antibiotics. Finally, there's comfort care, which may include medical treatment but which focuses on relieving suffering.

For Bernadette Wilson, the videos were an eye-opener about two aggressive procedures. "CPR and putting on a breathing machine - it doesn't work for cancer patients," Wilson says. Before seeing the videos, Wilson thought "that it would probably work."

After seeing the videos Wilson told her doctors that she doesn't want to be resuscitated. "When I saw that gentleman laying there on that ventilator - that was difficult. I wouldn't want that for me or anyone else."

Studies show that most patients who watch these videos change their minds about what they want and choose less aggressive care.

It's every person's right to choose the type of care that is best for them, and, as the level of patient education continues to expand, more than ever are choosing hospice care for the its ability to let them enjoy life.

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.

Hospital and Hospice

Care trends shift as patients and hospitals learn

Wheaton Franciscan Healthcare-St. Joseph started a palliative care program in 2004 with the goal of improving care for patients near the end of their lives.

The result: More patients are receiving hospice care in their homes and similar settings, and fewer patients are spending the final days of their lives in the hospital.

From 2003 through 2007, the hospital more than doubled the number of days that chronically ill Medicare patients received hospice care in the last six months of their lives.

The use of hospice care increased even more - 141% by the same measure - at Aurora Sinai Medical Center.

Most people would rather die at home, surrounded by loved ones, than in a hospital, attached to tubes and monitors. And a new report by the Dartmouth Atlas Project shows that those Milwaukee hospitals are part of an emerging trend to heed patients' preferences for the care they receive in their last days.

The growth in popularity of hospice care in the Milwaukee area, described here in a quote from a Sentinel Journal article, mirrors that in the rest of the U.S., as has been proven in studies like the Dartmouth Atlas Project and it's kin. While originally largely resistant, many hospitals now are embracing and integrating hospice care, partnering with area hospice programs or creating their own programs when others are not present. This bodes well for patients, as hopefully all will have a variety of choices for their end-of-life care, whether it be hospice or traditional medicine.

Conversations

Talking about hospice care

Caring Connections has always pushed for the best in end-of-life care, and their latest project is no difference. Titled, "Private Conversations and Public Discource: The Importance of Consumer Engagement in End-of-Life care," the report seeks to make public a subject that many, even those in health care, still find difficult to discuss. A Fort Morgan Times article has more details:

Private Conversations and Public Discourse is a call to action that encourages - and provides a framework for - a national agenda for consumer engagement in end-of-life issues. The call to action details eight specific areas that must be addressed, including:

Individuals need to talk about and document their wishes for care at the end of life.

Health care providers need to initiate honest, timely and culturally-relevant discussions with those for whom they are caring.

Policy makers need to eliminate barriers that prevent timely access to hospice and palliative care.

Employers need to support staff who are living with a serious illness or are caregivers or grieving.

The media needs to explore ways to demystify dying and help normalize the experience for the general public.

The stories of Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo are shared to help paint a picture of public discourse involving death. Past efforts to advance care at the end of life conducted on the national level are also cited.

The report was written and published by NHPCO`s Caring Connections, the organization`s consumer engagement initiative that provides free information on care, caregiving and community engagement. Funding for the report was provided by the Robert Wood Johnson Foundation, Princeton, New Jersey.

"Far too many people don`t have the information they need to make informed decisions about end-of-life care, " said Kathy Brandt, a senior vice president at NHPCO who leads Caring Connections. "We must not allow fear of the subject to discourage Americans from learning more and engaging in thoughtful discussions with family, loved ones, and healthcare professionals. The consequences of not understanding available choices are far more serious than many people realize."

People deserve the right to make informed choices about their health care, and without an understanding of those choices it simply isn't possible. Thanks to organizations like Caring Connections, more people will be able to make the choice that's right for them.

Cutting Hospice Costs Money

Hospitals cost more, have less benefits for many patients

When it comes time to tighten our collective belts, government officials are quick to slash the budgets of services like hospice care, but, as the state of Florida recently found out, there is no way around the fact that traditional hospital care is much more expensive. The Sun News reports:

A few months ago, the state decided it would save money by ending coverage of hospice care. The outcry was huge. You're being shortsighted, the opponents said. It will cost you more in the long run, they said. Caring for patients in hospice means fewer visits to the emergency room, where costs are much higher.

The opponents were all right, and the new director of the state Department of Health and Human Services quickly reversed the decision upon taking office in January, a triumph of common sense in a process that often lacks it.

Similarly, areas that are considering introducing hospice care programs worry about the initial costs, when the investment is proven to pay off over time both financially and in benefits to patients and the community.

Palliative Care Saves

Cost-effective and pain-killing? Yes please.

 Palliative care, a service very much like hospice care but for those who are not terminally ill, is a growing field but still quite misunderstood. The average patient does not know the difference, and as a result are often worried when a palliative care team approaches them. The reality, though, is that palliative care simply does a better job of coping with the actual symptoms resulting from serious conditions than traditional medical care. Much like hospice, palliative care reduces treatment expenses as well, as this quote from a Washington Post article explains:

A study in the March edition of Health Affairs found that Medicaid patients at four New York state hospitals who received palliative care on average incurred nearly $7,000 less in hospital costs per admission than Medicaid patients who didn’t receive palliative care. This study supports the results of a 2008 Archives of Internal Medicine study of non-Medicaid patients at eight hospitals that showed average savings of about $1,700 for those who survived a hospital stay and $4,900 for those who did not.

With the ever-rising cost of hospital care taking a toll on many, saving thousands of dollars per person is nothing to scoff at, not to mention the incredible benefits to patient and family.

A Special Loss

Grief is inevitable in the death of a parent

 A parent's death is a difficult time, and often brings a particular type of grief. In an article for Caring.com, Senior Editor Paula Spencer created a list of reasons why this "a Special Kind of Loss":

1. Our parents are our "wisdom keepers." "We spend a lifetime looking to our parents for answers," says psychotherapist Sherry E. Showalter, author of Healing Heartaches: Stories of Loss and Life. They're the repositories of knowledge about our history, our upbringing, family traditions, the names of all those faces in old photos. With their passing so, too, goes the information and insight that hasn't already been transmitted or recorded.

2. Unresolved issues often follow the parent-child relationship into adulthood. The balance of the parent-child relationship shifts several times, first as we gain maturity and create our own families, and then as parents grow older and often need our support. These realities bring plenty of opportunities for misunderstanding or discord. And not all these bumps are smoothed out by the end. Differences that go unreconciled can leave a forlorn sense of unfinished business, Showalter says.

3. Parent death always feels sudden -- even when it's not. People often expect that the death of someone older or someone who's been ill for a long time will feel easier to endure because it's predictable. Yet the disappearance from your life of a figure you've known since birth is, when it finally happens, always a sudden change.

4. Decisions about rituals are up to you. "Suddenly you're the adult preparing the funeral, the viewing, the obituary, the eulogy -- there's nobody older to tell you how to manage, no one to correct you or say, 'No, that's not how you do it!'" says one woman in her 40s who lost both parents within two years. "I felt pushed to a different level of adulthood."

5. Your children lose grandparents. Many people who lose their parents talk about "grieving for what won't ever be" -- being unable to ask their parents for parenting advice, for example, or having their parents attend their children's birthday parties, graduations, and weddings. Parents may also need to help their children mourn, or they may feel a need to preserve the grandparents' legacy for their children.

6. Losing the "buffer generation" forces us to reexamine our own mortality. When a grandparent dies, there's still a whole generation between you and death. With a parent's death, your own eventual demise may feel uncomfortably nearer.

While sadness is inevitable, hospice care can help by both improving quality of life and counseling the family before and after death, lessening the burden so that families and friends can better celebrate the life of a loved one.

Hospice Facts

More education means better decisions

Millions choose hospice care every year, but there are still many who could benefit from its services that do not because of a lack of information. The list below, from a Cumberland Times-News article, is a collection of important facts that everyone should know about hospice care:

1. Hospice is not a place but is a kind of high-quality care that brings the patient and family medical, emotional, and spiritual care and support focusing on comfort and quality of life.

2. Medicare beneficiaries pay little or nothing for hospice, and most insurance plans, HMOs and managed care plans include hospice coverage.

3. Hospice serves anyone facing a life-limiting illness, regardless of age or illness.

4. Research has shown that the majority of Americans do not want to die in a hospital; hospice treats pain and manages symptoms while allowing most patients to be at home.

5. Hospice also serves people living in nursing homes and assisted living facilities.

6. Hospice patients and families can receive care for six months or longer, and the greatest benefits are gained by being in hospice care for more than just a few days.

7. Less than one percent of Medicare beneficiaries live in an area where hospice is not available.

8. A person may keep his or her referring physician involved while they received hospice care.

9. Hospice serves people of all backgrounds and traditions; the core values of hospice-allowing the patient to be with family, including spiritual and emotional support, treating pain-cut across all cultures.

10. Hospice offers grief and bereavement services to family members and the community.

As you can see, hospice care encompasses a broad range of services and support systems. Because of this, it is the perfect choice for those facing end of life decisions.

Myths About Hospice

There are many misunderstandings about hospice care, from who is eligible to what happens after you enroll. Although primary physicians should be supplying this information, the reality is that many wait until it is to late to even mention the possibility of enrolling in hospice. Thankfully, there are articles like "4 Hospice Myths," from About.com, that help to educate and inform the public. A quote:

Myth #1: Hospice Care Means Giving Up Hope

Choosing hospice care in no way means a patient is giving up hope. It may mean redefining hope. Where a patient once hoped for a cure they may now hope to be pain-free. Hope for a patient may mean seeing a distant friend or relative one last time or taking the trip to the beach. Hope could be as simple as wanting to spend as much time with loved ones as possible, or remaining at home rather than having to go to the hospital or a nursing home.

Hope looks different in hospice care but it is certainly not lost. The hospice team can help patients accomplish tasks, fulfill wishes, and maintain hope.

Myth #2: Hospice Means That I Have To Sign a DNR

Having a Do Not Resuscitate order (DNR) in place is not a requirement to receive hospice care. Signing a DNR means that you do not want to be resuscitated with CPR or other means should your breathing or heart stop. While many patients on hospice elect to have a DNR in place, it is not the right choice for everyone. The goal of hospice is patient comfort with the patient directing care. No decisions should ever be forced upon patients, including hospice patients.

Myth #3: Hospice Is Only for Cancer Patients

In reality, 51% of hospice patients are admitted to hospice with chronic, non-cancer diagnoses. That means just under half of hospice patients have cancer. Some of the most common non-cancer diagnoses in hospice are heart disease, dementia, lung disease, kidney disease, and liver disease. The hospice team is very skilled at managing symptoms of cancer and equally skilled at managing symptoms of many other chronic illness.

Myth #4: Hospice Is Only for Patients who Are Close to Death or Actively Dying

If there is one myth that bothers me most, it’s this one. Because of the highly skilled care that hospice workers can provide to their patients, hospice works best when the team has time to deliver it. The dying process takes time. Patients and their loved ones need support, information, and medical care. Social workers and chaplains need time to work with patients and their loved ones to bring them to a place of acceptance. Nurses and doctors need time to get the patient's symptoms optimally managed.

The work of the dying takes more time than the average length a patient is on hospice. Currently, the average length of stay on hospice is only 14-20 days. It saddens me to think of all the care those patients missed out on.

Removing the stigma of hospice and redefining end-of-life care is essential to the future of health care. The population of seniors in the U.S. is expected to double in the next 30 years. That means more people will be living with chronic, life-limiting illness that need expert end-of-life care. Dispelling these myths about hospice can bring us one step closer to providing quality, highly skilled care to patients at the end of life. 

There are more resources available for free on the Web. A good place to start is our own home page, Hospice Care Corporation, or just type "hospice care" into your search engine of choice.

Choosing End-of-Life Care

Make your care choices in advance

A new type of program is making it easier for people to make their own end-of-life health care decisions, removing the stress and pressure from families and loved ones. A recent Wall Street Journal article described these programs, called "Polst":

The programs are known as Physician Orders for Life-Sustaining Treatment, or Polst. They are meant to complement advance directives, sometimes known as living wills, in which people state in broad terms how much medical intervention they will want when their condition no longer allows them to communicate. A Polst, which is signed by both the patient and the doctor, spells out such choices as whether a patient wants to be on a mechanical breathing machine or feeding tube and receive antibiotics.

Polst programs are currently in use in 14 states and regions, including California, Oregon and New York. Three states, Colorado, Idaho and Pennsylvania, adopted Polst programs recently, and another 16 states and six regions are developing programs. Besides providing documents that meet local regulations, the programs train health-care providers to discuss end-of-life treatment choices with patients with terminal illness or anyone wishing to define their care preferences.

Polst forms are recognized as official medical orders, giving them more weight than living wills and protecting medical personnel such as doctors or hospice care workers who might otherwise be held liable for the results of following a patient's orders. Anything that makes it easier to receive the type of end-of-life care that a person desires is good, and a nationwide Polst program could be just the thing we need.

Caregiver Trauma

Hospice reduces stress on caregivers too

 Hospice care doesn’t only benefit the dying. It also improves outcomes for their survivors as well, a recent study of cancer patients found.

Researchers from the Dana-Farber Cancer Institute found that patients who died in the hospital or intensive care unit experienced more physical and emotional distress and worse quality of life in the final months of their life than patients who died at home.

In addition, caregivers of patients who died in the intensive care unit were five times more likely to be diagnosed with post-traumatic stress syndrome than those of patients who died at home in hospice care (21 percent compared to 4 percent).

The study is based on interviews with 342 terminally-ill cancer patients and their caregivers. It was published last year in the Journal of Clinical Oncology.

This quote, from a Sun Times article, shows that hospice care is not only more beneficial for patients, but their caregivers as well. The intensive medical procedures taken in the hospital are costly and extremely stressful to all involved, evidenced by the fact that even caregivers are developing PTSD, a disorder often attribuited to those returning from war or surviving extreme accidents.

Hospice Nurses

What do they do?

When it comes to hospice care, the nurses are a critical part of the team. In an article for Prepared Patient, Amy Sutton listed some typical duties that a nurse would be responsible for:

• Greet patient and caregiver(s); the nurse may offer support to the patient and caregivers    privately during the course of the visit.
• Ask about appetite, energy levels and whether patient is experiencing pain or symptoms.
• Take patient’s blood pressure level, heart rate, weight, and other vital signs.
• Ask if medications seem to be helping or if they are causing problems.
• Assist patient and caregiver in obtaining medical supplies or equipment needed at home.
• Offer advice to caregiver and patient about what to expect next in disease process and when/how to request for special assistance.
• Listen to patient’s and caregiver’s emotional concerns and suggest/arrange assistance from a social worker or pastoral care.

As you can see, it is the nurse's job to help maintain not only physical comfort, but mental as well. In fact, this is the goal of the entire hospice team, and a large part of the reason why hospice is so effective.

The Advantages of Palliative Care

Live better, longer

While closely related, palliative care differs from hospice care in that, though it also addresses patients facing life-threatening illnesses, the service is available to those who are still actively seeking medical care. Just as with hospice care, palliative care has been shown to extend patient's lives and greatly reduce pain and suffering. Need proof? Just take a look at this quote, from a USA Today article by Liz Szabo:

A study of 151 patients published last summer in The New England Journal of Medicine showed that getting early palliative care — in addition to regular medical treatment — helpedpeople with lung cancer live three months longer, compared with those given standard care.

In comparison, chemo can give newly diagnosed lung cancer patients an extra two to three months of life, says study co-author Thomas Lynch, director of the Yale Cancer Center.

"If this was a drug, this would be on the front page of every paper in the country, talking about 'New advance in lung cancer,' " Lynch says.

But palliative care patients didn't just live longer. They also lived better, with less depression and a higher quality of life, he says.

Studies like this are the reason palliative care is getting some long-deserved attention. Thanks to the winning combination of comfort and treatment, patients and their families are able to enjoy more time together.

HCC Store Grand Opening

The grand opening of Hospice Care Corp's new thrift store location was a great success, and the expanded space has been bustling since the doors opened. Channel 12 WBOY News was kind enough to cover the event, and thanks to reporter Lisa Robbins we have this story:

FAIRMONT -- Fairmont's new Hospice Care Thrift Store held an open house to celebrate its grand opening.

There was music, food, and even door prizes.

The store outgrew its old location, and moved to a bigger space last month.

Manager Patty Kidder says it's been extremely busy, and that everyone is grateful for the donations and community support.

"I want to thank everybody for your donations and for backing hospice. If they want to come in and see what we have if they've never been here, they will really be surprised. We have name brand clothing. People have been very supportive of us," she said.

The new store is located at 317 Market St. in Fairmont.

If you would like to donate any items, call the store at 304-366-7995.

American Cancer Society

ACS honored for supporting hospice care

The American Cancer Society has been a vocal advocate for palliative and hospice care for years, and it is because of those efforts that the society is being honored by the American Academy of Hospice and Palliative Medicine with a Presidential Citation Award. In a press release, AAHPM president Sean Morrison explained more about the reasoning behind the award:

"The American Cancer Society has truly been a leader in promoting palliative care for persons living with cancer," said R. Sean Morrison, M.D., FAAHPM, president of the AAHPM Board of Directors in a letter to the American Cancer Society. "Your efforts to foster and fund palliative care research; educate the public on the benefits of palliative care for persons living with serious or life-threatening illness; and promote effective healthcare policy that improves quality of life for persons living with cancer and other serious illness are just a few of the reasons why the American Cancer Society is so deserving of this recognition."

Organizations like the ACS have been part of the reason that hospice is both more effective and better understood than ever, which means more people are getting the care they need.

Making Dreams Come True

Hospice care patient lives his dream

Hospice Care Corporation and the Dream Foundation work together to grant wishes to terminally ill patients, brightening the lives of those who live with tough circumstances. Most recently, HCC patient John Bennet got that wish, as described in this article, courtesy of WBOY 12 TV:

VOLGA -- What if you were terminally ill and you had one last wish?

Barbour County cancer patient John Bennett is getting that one last wish, thanks to the Dream Foundation. He has terminal cancer and functions under hospice care at his Volga home he shares with wife Cyrena.

"I have no idea how much longer I have left. I just sit each day and worry when the next day will be," he said.
 
"In the past year and a half I've seen him go through a lot that no woman should have to see her husband go through," Cyrena said.
 
But Monday, the couple got a sweet Valentine from volunteers for the Dream Foundation: they're sending the Bennetts on an all-access VIP trip to the Daytona 500, all for one reason.
 
"I've been a [Dale Earnhardt,] Jr. fan ever since he's been racing and I'd just love to have the chance to talk to him," he said.
 
His wife said nothing gets between John and his NASCAR.
 
"Sunday is race day. My phone does not ring. No company. He sits right here in front of the TV and if Junior wrecks you can hear him five miles down the road," Cyrena said.
 
"We want to make their dream come true in life like John got today. It's a bunch of volunteers and philanthropists that provide money to fund this and then we get to deliver it out in the field," said Dr. Michael Cilella, a volunteer for the Dream Foundation.

The Bennetts will fly to Florida and stay in a hotel, all courtesy of the Foundation.
 
Maybe that's why now, they believe in dreams.

"It makes his dream come true to meet his ultimate race car driver. That's what this is all about. This is his day," Cilella said.

"It's definitely going to give me some more good memories while I'm here," John said.

If you'd like to volunteer for or help the Dream Foundation, you can find more information through the link below.

Related Links:
- Dream Foundation

Dispelling Hospice Myths

Hospice care is about living well

Vailia Dennis says she is living proof that entering hospice doesn't mean you die on anyone else's timetable.

Dennis, 91, of Rancho Bernardo, Calif., signed up for hospice care 6½ years ago, after she was diagnosed with a fatal heart condition. At the time, she was told she'd have six months to live.
"The illness, the heart condition that I have, is one that should have and could have caused my death a long time ago, and just hasn't done it up until now," Dennis said. "Nobody knows why, and that's OK by me."

Dennis was 85 when her doctor gave her the bad news.

"The doctor wanted me to go in for open heart surgery," she said. "I refused, and I thought it made a lot of sense. I've seen people my age go in for open heart surgery and, when they come out, they aren't the same. They are more fragile."

Dennis promptly called San Diego Hospice and signed up for its care. She already knew that hospice care was what she wanted and needed.

"I have had three members of my family die at hospice," she said. "Hospice, to me, is like handing my problems to an angel. That's the way I feel about hospice."

This quote, from a Caring.com article, is a wonderful story because it demonstrates the fact that entering hospice care is not a death sentence. There is often a misconception of hospice as simply a place to die, when in fact it is everything but. With a focus on comfort allowing patients to enjoy life on their terms, hospice care is a proven choice.

New Hospice Care Store

Come down and see!

Plans for Hospice Care Corporation's updated thrift store have been in the works for some time, as the old one had simply outgrown itself. The new location, at 317 Market St. in Fairmont, WV, has several improvements, as described in a story by Channel 12 WBOY's Lisa Robbins:

The new thrift store is located at the corner of Market Street and Columbia Street, and is about twice the size of the original store.

"We wanted an opportunity to have a larger space so we could have some furniture and larger ticket items that would increase our sales, and be things that people really want," said Cynthia Woodyard, VP of Public Affairs for Hospice Care.

The non-profit uses the money it makes at the stores, and puts it towards people who need hospice services but are unable to afford them.

"My parents both died from cancer, and I was the caretaker. I know how important it is for people to have that opportunity for hospice care because it's so demanding on the families," said volunteer Sharon Curry.

"This is a way for the community to give back to its friends and families. All of the merchandise in this store is donated by people in the community," said Woodyard.

Hospice Care Corp's nonprofit services are entirely funded by donations, fundraisers, and purchases from this store. Come on down for good deals and a good cause!

Hearts for Hospice

HCC kicks off fundraiser

We're exciting to have launched another Hearts for Hospice campaign, and look forward to seeing those hearts in businesses across the state! Kelly Rippin and WBOY 12 TV recently interviewed Hospice Care Corp's Cynthia Woodyard for more details:

CLARKSBURG -- During the month of February, seeing hearts in businesses is pretty common, but some of those hearts are on display for a cause that often goes unnoticed.

"February is our annual Hearts for Hospice campaign. It's where we have a heart for our patients and families and we hope you'll have a heart for hospice," explains Cynthia Woodyard with the Hospice Care Corporation.

"It’s an important service both for the patient and family because they help people get through those hard times."

Hospice care can be a sensitive topic for some, and the campaign hopes to raise not only money, but awareness of how important it is to the community.

"Hospice is not something that people really want to talk about or think about until the time comes. And February is a time for us to raise the awareness that hospice services are out there. It's an option for people to provide quality of life. And it’s another way for the community to get involved and raise money for patients and families who need our services," adds Woodyard. 

As a non-profit, Hospice Care Corporation needs funding to continue to provide quality care.
"Some of their services may not be covered by Medicare, so they still have to provide the service, so they use outside funding, such as fund raisers like this" 

"We provide care for a variety of cases. We do not turn people away. No matter if they have insurance or don't have an ability to pay. There's also complicated cases and expensive treatments. Other hospices don't necessarily take these cases due to the fact that it costs. And because we're community based and community owned that's one of the things that we really do. It’s part of our mission. It's why we've been here 27 years and why we're going to be here for decades to come," says Woodyard.

It’s not too late for a business to join the “Hearts for Hospice Care” campaign. Contact Cynthia Woodyard at cwoodyard@hospicecarecorp.org.

Hospice is Comfort

Why patients prefer hospice care

"I don't know about you, but when I'm sick and not feeling good, I'd much rather be at home," said J. Donald Schumacher, president and chief executive of the National Hospice and Palliative Care Organization, a nonprofit group of hospice and palliative care programs and professionals in the United States. "I think dying is the same way. If you're going to die, it's better to be in your own environment and away from the high-technology setting of the hospital."

This quote, from a Caring.com article, explains one of the largest reasons why more and more people are choosing hospice care over aggressive hospital treatment. With a focus on pain management and comfort creating a better environment for patients and their families, those who wish to make the best of the last stages of their lives take advantage of hospice.

What's the Difference?

We often hear hospice care and palliative care mentioned together, and they are indeed very similar services. There is one key difference though, as this quote from an AZ Central article by Dr. Peter Hedrick explains:

Palliative care differs from hospice care in that patients may continue to receive active, curative treatment and palliation throughout their illness. Patients who opt for hospice must have a probable life expectancy of six months or less and not be receiving aggressive treatment for their disease or condition.

Those under palliative care may stay in a hospital, or transfer from their home or a facility for treatments beyond the scope of hospice while still receiving care focused on comfort and quality of life.  Growing in popularity alongside hospice care, palliative care is becoming the choice of many patients worldwide.

Hearts for Hospice Care

Hospice Care Corporation runs regular fund raising events in order to raise money for its non-profit hospice care services. The latest, "Hearts for Hospice Care," was covered by the Dominion Post, which was kind enough to print this story:

Hospice Care Corporation has launched its 2nd annual "Hearts for Hospice Care" fundraiser to increase awareness and raise money for patients who need hospice services. The campaign will run during the month of February with the support and participation of local businesses and customers.

The goal for this year's campaign is $10,000, which benefits patient care for Hospice Care Corporation, a 501c3 nonprofit corporation. All proceeds will pay for patients and families who do not have the insurance or the ability to pay for hospice care services. Every dollar raised stays within the 12 counties Hospice Care serves in West Virginia.

The campaign is similar to those run by many national organizations fighting arias diseases, the one important distinction: "All of the money that is raised will stay right here in our communities to help our friends, neighbors, and loved ones," said Cynthia Woodyard, Vice President of Public Affairs and Access for Hospice Care Corporation. "One dollar dilated by many can make a big difference in our loved ones and neighbors lives, " Woodyard added.

Local business , organizations and individuals are encouraged to participate. You can support Hospice Care's mission through a corporate sponsorship, or allow your customers to donate $1 or more and proudly honor their loved one on a heart displayed in your business. All contributions are tax deductible. Hospice Care provides the materials; you just have to make the call.

Medicare Revisions Hurt Hospice Care

New changes don't bode well for hospice

One new health care regulation has received the ax just days after it went into effect.

The rule said that Medicare would pay for end-of-life counseling as part of an annual wellness visit with your physician.

It was a regulation designed to give you as a patient and your doctor that opportunity to explore options and spell out just what treatments you would or would not want in the last stages of life.

The White House announced Wednesday that the voluntary doctor-patient discussions, for which physicians would have been reimbursed, would not be part of Medicare policy.

This news, reported in the Gainesville Sun, removes a significant benefit from the new health care legislation, hurting the progress of hospice care. Making informed decisions is the cornerstone of any health care process, and by denying aid that would allow all patients to speak with a professional about these decisions many will be left in the dark. Combined with other changes that will keep hospice care program's reimbursement at the level it is now while costs continue to rise, the legislation looks to be having a significant negative impact.

New Challenges for Health Care

Hospice care presents relief for overburdened health care system

“What people are finding is that quality of life is being sacrificed for some short-term relief,” Keochakian said — but the goal of maximizing life at any cost has long been the dominant mindset in American medicine. 

“Hospice is a philosophy, and it’s difficult to switch philosophies midstream.”
Brennan said patients and doctors today share a culture where no procedure or treatment is too much if there’s the slightest chance of buying a little more life.

“And if there’s a reasonable likelihood that you’re going to get what you’re striving for, then God bless you. But by trying to extend life, you might waste some of the precious time you have, in and out of hospitals with procedures that are to your detriment,” she said.

This quote, from a BusinessWest article interviewing several medical experts, describes the dilemma that faces a health care system seeking ways to care properly for an ever-increasing volume of people reaching that age where they require significant attention. What most experts can agree on is that, with its focus on patient comfort and care, rather than expensive and intrusive procedures, hospice care will certainly be a part of this solution.

More Options for Children

Pallative and hospice care have been the focus of a lot of attention over the past couple of years, and as a result Medicare's coverage for these services is evolving. Following yet another regulation change, children in California will now have more options when it comes to life-threatening illness. A quote, from the LA Daily News:

Laws governing public health insurance force parents of dying children to make an excruciating choice: Either pursue treatment for a cure in hopes of saving the child's life, or receive treatment for comfort and pain management.

That will soon change.

This year, children on Medi-Cal will be able to receive palliative care - which includes pain and symptom management, spiritual guidance, counseling and other services - and still be able to pursue life-saving treatment under a pilot program making its way throughout the state.

This pilot program should give more choices, and more comfort, for both children and their parents while facing the difficult choices that come with end-of-life situations.

Medicare Expands Coverage

Thanks to new Medicare regulations, West Virginia's elderly will have an easier time making end-of-life decisions, such as entering hospice care or deciding whether they wish to be resuscitated or put on life support. With the new regulations, patient costs will be covered for consultations regarding all forms of end-of-life care with a physician during an initial "Welcome to Medicare" visit, as well as during annual checkups. Hope is that increased advance planning will lead to better quality of life, as well as reduce the costs incurred during ordinary emergency hospital care.

Hospice Care Thrift Store News

Hospice Care Corp.'s thrift store on Fairmont's Market Street has been a major success, helping to generate funds for the nonprofit organization's efforts in the community. Here is a nice write up from Katie Wilson at the Times West Virginian, describing some exciting news regarding the store:

Hospice Care Corp. is finding new ways to enhance patient care.

Several years ago, the nonprofit group opened a thrift store on the Friendly City’s Market Street. Since that time, the store has become the flagship of the group’s thrift store operations, said Cynthia Woodyard, the group’s vice president of public affairs and access.

“Fairmont has been the jewel of our thrift stores and we’ve been looking for an opportunity to expand,” Woodyard said. “The opportunity presented itself, so we’re moving right up the street.”

At this time, the former store is closed for the move. Woodyard said she hopes the new store will be open by the end of the month.

Our hope is that the new location will allow even more shoppers to find and enjoy the store, which will in turn help our patients and their families. We can't wait to see you there!