Patient with Chronic Lung Cancer Becomes Hospice Caregiver

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After several years of lung cancer treatments, surgeries and therapies that showed no progress, Jim Stanicki said he'd had enough.

Last year, Stanicki, a 60-year-old-man from Denmark, Maine, chose the option of palliative care, a form of medical treatment that concentrates on reducing pain and other effects of the disease, rather than attempting to reverse the progression of the disease itself.

"I realized that, for me, a day living on chemo is a day I'm not living," said Stanicki, who was diagnosed with bronchoalveolar cancer in 2007. "I'd rather walk outside, live a life, and breathe the air for as long as I can."

Stanicki has not only accepted his fate, but has become a leading voice on how to enjoy life, whether you know the end is coming or not.

"I seem to be able to deal with death a lot better than others, so it seemed like the work I am supposed to do right now," said Stanicki. "I'm not excited about dying, but I'm having a splendid end-of-life. I appreciate everything I have."

On Inspire.com, a health and wellness social network that covers a wide range of health conditions, Stanicki has been active in sharing the highs and lows of his chronic disease, while also becoming a voice of reason, comfort and wisdom, for other members in their end-of-life experience.

Now, Stanicki is on a new mission, a new "dying kind of work." He has finished nine three-hour hospice training sessions. With his own experience, Stanicki hopes to comfort others who are in their end-of-life.

"A lot of people, understandably, have problems with the end of their life," said Stanicki, "It seems to be something that I can handle well."

While Stanicki can't be sure when he will die, he said he feels healthy enough to make use of the hospice training while he can. But, still, hospice trainers were concerned when he entered the program.

"They were worried I'd die before the hospice patient," said Stanicki with a chuckle. "They figured that wouldn't be too good for morale."

End-of-Life Patient and Caregiver

But now, Stanicki said the team feels more comfortable with his participation in the program, even though he hasn't been matched with a patient yet.

"No one seems to be dying," said Stanicki. "I'm the only one I know who's dying."

Dr. Mohana Karlekar, medical director of the palliative care program at Vanderbilt University, said that it is important for end-of-life patients to connect with others in a similar situation.

"Having patients talk about their real stories is wonderful because one cannot argue that 'they do not understand,'" said Karlekar. "There are so many people afraid to talk about it, and leading by example is very powerful."

Karlekar cited a recent study published in the New England Journal of Medicine that demonstrated decreased mortality in those with advanced lung cancer in patients who chose palliative care and chemotherapy versus chemotherapy alone.

"I think as palliative care grows, one will see more patients volunteering in palliative care programs," said. "If we integrate palliative care as we should, we will see lot more patients undergoing, for example, chemotherapy and palliative care, and more patients being able to volunteer as Jim has."

But Dr. Michael Ashburn, director of pain medicine and palliative care at the Penn Pain Medicine Center in Philadelphia, said that, in his experience, it is not common for palliative care patients to volunteer as hospice caregivers, probably due to several reasons.

Hospice patients usually have limited energy, as they're experiencing symptoms of a serious medical condition, said Ashburn. And if they are well enough, Ashburn said that those patients tend to focus on personal and family issues.

"They [may] want to complete a task that they are already engaged in," said Ashburn. "Therefore, what Mr. Stanicki is doing is truly unique."

Stanicki made it clear that he continues to "tie up loose ends" for his family. He has made sure bank accounts are intact and insurance is verified, and has even written specific instructions for each family member so as not to leave his wife and children with further hassles after his death.

Man With Terminal Cancer Becomes Hospice Counselor

When asked if he believes his hospice training was unique, Stanicki said, "Well, I don't know. I've always been somewhat strange. I just think living in the present is a pretty cool place to be."

Strange may be one way to describe it — just plain difficult may be another.

"Dealing with your own mortality and impending death can be frightening and overwhelming," said Ashburn. "One of the cornerstones of end-of-life care is to help provide the support the patient and their family needs to die with dignity and peace."

Stanicki wholeheartedly agreed.

"Facing your own mortality is a daunting task, there's no doubt about that," said Stanicki. "It is not to be done easily. It's work."

But Stanicki said he would look forward to supporting a hospice patient's journey to whatever extent they needed support. And he is quick to note that he would stay true to the hospice training he received.

"I'd just let them know that someone is there for them," said Stanicki. "I'd be a human. There is not a lot of human stuff going on right now. I think just someone sitting there, touching their hand and being there can be a lot."

Difference between Palliative Care and Hospice

Doctors said people often mistake palliative care for hospice care and vice versa. Hospice care provides palliative care, in a person's home, residential setting or hospital, for people in the last six months of the patient's life.

"Palliative care is not hospice," said Dr. Emily Chai, medical director of the palliative care program at Mount Sinai Hospital in New York. "Palliative care can be provided at any time in the course of serious illness to address medical, social and spiritual distress."

Chai said palliative care helps patients with symptoms while undergoing curative treatment, assists in making sure the treatment meets the patient's and family's goals, and coordinates with decision making.

"Palliative care is not something that changes your care," said Karlekar. "It is additive to one's current care, and it is not about giving up, or not being a 'fighter.'"

"Palliative care is about doing everything possible to maximize someone's quality of life in a wholistic sense," said Karlekar.

That includes aggressive symptom control, advanced care planning and preparation for death while seeking curative and life-prolonging care, like chemotherapy. When thinking about how they would like to live or die, palliative-care patients talk with their doctors, families and society to seek answers and decisions.

"The truth is that people think about these things all the time," said Karlekar. "Having palliative care involved gives people who are already facing so many daunting issues enhanced support to face these challenges."

Family Focus

While it is important for hospice or palliative care patients to receive support and guidance, experts say a focus also must be on the family — the people left behind.

"Good hospice programs also try to provide support and comfort to the patients' caregivers," said Ashburn. "This care often needs to extend beyond death, to help the surviving spouse recover from the loss of someone they love deeply."

Stanicki said he worries about his family, and often thinks that his wife, daughter and son are in a worse position than he is.

"They're so brave," said Stanicki. "They've gotta deal with this, too. It puts them in a terrible position. Their lives are going to radically change, and it's totally out of their control."

"This whole dying thing is a big deal," he said. "You leave a hole. But you gotta go. It is what it is."

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