One last Christmas --- asked, received but wish we hadn't...

In an earlier blog post, I talked about wanting one last Christmas with someone I loved dearly who was dying of cancer. I kinda sorta got my wish. She survived. But it was torture. She was in horrific pain as her pain receptors grew resistant to the pain meds (simplification). In fact, she hung in there until yesterday. But she wasn't really with us.

She was in hospice for a month and a day.

When she went in they gave her a few days to maybe a week. Because she was so young, just turned 23, her body fought long to stay on this earth.

Losing someone so young, so giving, so smart, so beautiful, so perfect...someone who probably never did anything worse than an occasional swear word...someone who wanted to be a nurse and managed to accomplish that goal, who graduated with honors, who had just taken a job, who was wonderful at helping others, who did all of that while undergoing treatment for cancer...makes one question everything about life.

I know life isn't fair. I know horrible things happen. But man, there were so many heartfelt prayers going up for this child. So many people praying, sending positive thoughts, so many doctors fighting for her. It's impossible to fathom a world where this could happen to someone with such a bright, awesome future.

To have her life end in such a torturous manner is beyond any kind of comprehension. If there had been even a tiny bit of hope, any way she could have been healed I could understand I suppose. But even if a miracle cure appeared it was so far past the point anything could happen there was NO point in just having her lay in a bed in pain for weeks.

Her family was there around the clock. Her parents had to watch her suffer and know there was nothing they could do to help their baby.

Why do we do this to people? I know there are many ethical issues, many reasons for not going the route of ending someone's life. But there has to be some balance, some way to stop this. Giving oxygen when her breathing became strained? Fluids to keep her hydrated? Why? I don't know if stopping any of that would be painful. I really don't know much about how our body reacts to the process of dying when fluids or oxygen is denied.

I guarantee you I am going to be doing some research. I am going to find out. I have a living will and a directive for do-not-resuscitate. Maybe I need a separate rider that says no life-giving nutrients to prolong inevitable death? You better believe I am going to figure it out, then pass on whatever I learn to the rest of the family.

I can't bear the fact that she suffered, and that her sister and parents suffered so mightily, as she exited our world. I am praying that she is happily frolicking in heaven right now. I know that this has forever scarred everyone and I know that beautiful soul would not have wanted anyone to suffer because of her. I know that she suffered more knowing her parents and sister and those of us who loved her suffered.

Nothing can ease the pain of losing her.

Hospice Care Remains a Misunderstood and Underutilized Benefit, According to In-House Hospice

RJ Note: We've talked before about how beneficial Hospice can be to both patients and their families. Fayette County is blessed to have several options available as our citizens look and consider this type of care for our loved ones. Be sure to talk to one of our favorite groups, Hospice Advantage of Fayetteville. They've helped us before- even out of state referrals to other groups.

/PRNewswire/ -- As unemployment continues to rise in the United States, Americans are battling to hold onto their health coverage. Many are worried about what would happen if they were struck with a serious medical condition - who would care for them? How would they pay for the care? But the widely known benefit of hospice care is often underutilized due to various misconceptions. This benefit is available to all eligible Americans - whether they are employed or not.

Although hospice care has slowly increased over the years with more than 1.2 million Americans enrolled, many Americans are still uninformed of its full services. Because hospice is often misunderstood by patients, family members and some health care providers, many patients who can benefit from hospice care are never enrolled. Of those patients who are enrolled, care is often given far too late. In fact, over 30 percent enter hospice within one week of death - much too short a time for the patient to benefit from the full range of services provided by hospice.

"We have to spread the message to more physicians, hospitals, patients and their family members to utilize hospice programs more appropriately," stated Laura A. Wagner, President and CEO of In-House Hospice. "Hospice services are covered through Medicare and most Medicaid programs. Even certain private insurances programs allow for hospice benefits. There is rarely out-of-pocket expense to the patient."

Wagner explains that Medicare patients are entitled to receive hospice care up to 180 days. Occasionally, with the improved quality of life, many patients live beyond the six month prognosis at which point their case can be reviewed and possibly approved for another 180 days of hospice programs.

"People pay into unemployment benefits in case they lose their job," explained Wagner. "What people don't realize is that they have also been paying for a hospice benefit. And now, with people out of work, losing their life savings, their homes, they should be using their hospice benefit to help themselves or their loved ones during this most important time. The hospice benefit helps the patient, the family and caregivers."

Those who are aware of hospice care often associate it strictly with cancer patients. But illnesses that qualify for hospice benefits also include: Congestive Heart Failure (CHF) and Chronic Obstructive Pulmonary Disease (COPD), End-Stage Renal Disease (ESRD), Parkinson's, adult failure to thrive and HIV.

Hospice services are not intended to speed up or prolong the dying process, but focuses instead on relief of pain and other symptoms while increasing quality of life. Hospice provides a holistic approach to care and often involves a team of nurses, social workers, chaplains, volunteers, home health aides and physicians with expertise in pain and symptom management. The team can also provide support to family members, significant others and children; for example, bereavement support is available for 13 months following the death of a loved one.

A trained healthcare professional is usually scheduled to visit on a daily or weekly basis as needed and is always on call 24 hours a day, seven days a week. The services often provided by a hospice program will include:

-- Personal care for the patient, in a manner that respects the
individual's dignity. The hospice provider may teach family or
caregivers how to provide proper care

-- Palliative care, including pain management through medications

-- Administering other medications, as prescribed by the physician

-- Spiritual support from the chaplain and spiritual volunteers

-- Companionship, such as reading a book aloud, playing cards, talking
together or simply sitting with the person

-- Emotional support for the patient and family members

-- Visits from volunteers, to provide companionship for the patient and to
offer respite for the caregivers


While it can be hard for a physician to determine an individual's life expectancy, it is part of the application process. Eligibility for hospice is based on two conditions -- that a terminal illness exists and that a physician has indicated the life expectancy as six months or less.

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National Hospice Month, 2008

RJ Note: Kudos to these caretakers who help patients and their families as the last great challenge of life is faced.

During National Hospice Month, we honor the dedicated health care professionals and volunteers who help the terminally ill spend their final days in comfort and with dignity. Hospice care providers and other compassionate individuals are a constant reminder that the greatness of America lies in the hearts and souls of its citizens.

Americans believe that every person has matchless value throughout all of life's stages. Hospice physicians, nurses, counselors, and volunteers put this belief into action by using their talents and energy to care for those who are terminally ill and by providing support and comfort to their loved ones. As an alternative to traditional services, hospice care frequently provides assistance in the home so that patients can be surrounded by family and friends. Hospice counselors offer guidance to patients, as well as to those close to them, as they deal with grief, anxiety, and other end-of-life issues. Through these and countless other acts of compassion, our Nation's hospice caregivers lift up souls, offer peace of mind, and strengthen America's culture of life.

Throughout National Hospice Month, we recognize hospice care professionals and volunteers for their selfless efforts to provide physical, psychological, and spiritual assistance to terminally ill patients and their families.

NOW, THEREFORE, I, GEORGE W. BUSH, President of the United States of America, by virtue of the authority vested in me by the Constitution and laws of the United States, do hereby proclaim November 2008 as National Hospice Month. I encourage all Americans to observe this month with appropriate programs and activities. I also ask Americans to recognize our health care professionals and volunteers for their contributions to helping provide comfort and care to those facing terminal illness.

IN WITNESS WHEREOF, I have hereunto set my hand this thirty-first day of October, in the year of our Lord two thousand eight, and of the Independence of the United States of America the two hundred and thirty-third.

GEORGE W. BUSH

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