Carin and Cristian de León grew up together in Mazapenango, Guatemala before coming to the United States. As her brother, Cristian looked out for Carin.

While Carin missed the sites of Guatemala, its fresh bread and the pasteles (cakes), she found a place to call home in Nashville, where she had family.

When she was diagnosed with neck cancer, Cristian was there for Carin in that brotherly role once again. She moved in with Cristian and his family, something that made her feel protected and comfortable.

When Carin’s prognosis was declared terminal, they turned to Alive Hospice. Just as Cristian had been there to support his sister during her illness, Alive Hospice was there to support them both. And though her illness left her unable to speak, she didn’t let it stop her from conveying how she felt about others, whether her brother or her Alive Hospice caregivers.

“I feel a lot of love for the people who come,’” Cristian said, reading the words Carin had written on a pad moments before. “They provide good care for her. They’re kind and they make her feel important.”

He translated her words from Spanish to English as they sat together on a couch in their living room; a gentle breeze blew through an open window. Sunshine illuminated the walls, a cheerful orange, and figurines of lions adorned the room in honor of their family name: de León.

Those lions saw many a visit from Carin’s hospice caregivers. Carin’s nurse made sure her necessities were provided to ensure her comfort, Cristian said. Her social worker provided encouragement and reassurance, and her hospice aide (a certified nurse technician) helped with her personal care needs. They made her smile, and her family knew that a caregiver was only a phone call away if needed.

“She doesn’t feel alone,” Cristian said. “It feels like family.”

Información sobre Alive Hospice en español: haga clic aquí.

Jan Jones

It is often that people will say to me, “How can you do what you do? I could never work there.”  It is as if people look at our work as depressing.

What a rewarding profession to be able to provide comfort to patients and their loved ones at arguably the most crucial and special times of their lives. 

As you walk around our facilities, you can’t help but notice the bulletin boards wallpapered totally with loving thank you notes from grateful family members. Our staff daily share stories of such inspiration and caring that fill our very souls. Each and every individual who is employed by Alive Hospice or works as a volunteer knows exactly why he/she is here. They tell us they are called to be here!

So, next time you think about asking a hospice employee or volunteer “How can you do that?” think about wallpapering your workplace with loving thank yous and you may already have your answer!

Jan Jones is president and CEO of Alive Hospice.

A dog or cat might be the last thing a person would expect to see in the hospice setting, but Alive Hospice patients are visited by animals every week!

WKRN Channel 2 recently featured pet therapy volunteers Christy Biles and her 4-pound, four-legged companion named Sophie (look for the video link at the upper right). They visit Alive Hospice at Saint Thomas Hospital once a week and have spent time with hundreds of patients and family members.

As Channel 2’s Jamey Tucker showed, it’s all part of providing comfort for patients and families during a difficult time. And oh, what a difference it makes!

Volunteer Christy Biles and Sophie.

Sarah Neeley

I talked with someone not long ago whose husband had died just a few months before. She referred to their house, their children and their life. She stopped and said, “I mean my.” I told her that saying nothing more than “we” was fine and that I was still a “we.” A tear trickled down her face and she thanked me.

But now, after almost a year of widowhood, I am a “me.” I have tucked my “we “away. It began by taking off John’s wedding band. I don’t know why I did, I just did. I began doing activities we once did together, alone. I can listen to his iPod without crying. I smile when I hear John’s songs. I remember him with love and humor, but I am a “me.”

I questioned this and spoke with the pros. My “me” can be viewed as a manner of honoring him, our relationship, and our world by moving forward. This is not a “getting over” or “getting through.” It is another passage. It is a way for me to grieve and grow.

I refer to the house as my house and the garden, aside from a specific rose bush, as mine. One plate is at the dinner table with no thoughts about what once was John’s place.

John’s place is in my heart. My life moves forward with the knowledge and strength of real love. The iPod is mine now and I am pretty darned tickled. It is the best. I am thrilled it’s mine!

Sarah Neeley is Alive Hospice’s clinical nurse educator.

Dr. David Tribble

I encountered an interesting blog on GeriPal, exerpts from which are as follows:

“Recently, Zaldy Tan MD wrote a thoughtful article in JAMA (The “Right” to Fall, JAMA. 2010;303(23):2333-2334) regarding the autonomy of elders and the tension we often face in the geripal [geriatric and palliative] world between doing right for the patient and preserving the rights of the patient. “

The commentary goes on to describe patients we have all had, who are on a clear-cut course to self-injury or self-neglect, but who possess enough clarity to understand the risks and choose to take them. If we hold autonomy above all else (as seems to be the trend currently), then the patient has the right to make his/her own decision regardless of the outcome we can all see coming. 

The author of the blog, Helen Chen, M.D., describes this well:

“… while we can and do use individual autonomy as the principle that enables us to ethically step back and however regretfully watch the train go off the cliff, the emphasis on individual autonomy may also give us, in some sense, the right to fail families and caregivers, and perhaps even the patient herself.”

The rest of the issue raised is even more complicated in that this patient’s decision affects not only herself, but her daughter, who is her caregiver, and whose health is adversely affected by the results of her mother’s ongoing uninsightful decision-making. If we accept as true that “your right to swing your fist ends where my nose begins,” then the extent to which a patient can assert his or her autonomy might find limits in terms of the affect of that autonomy on other people. The author posed the possibility of “relational autonomy,” warning almost immediately of the dangers of supplanting individual autonomy with the “greater good of society” and the slippery slope that creates in terms of loss of autonomy completely.

For as long as I have been in medicine (some 35 years now), there have been those who advocate authority-driven dictates based on societal outcomes debating hotly with those who uphold individual autonomy above all else. What we have learned in hospice work is that it is rarely a matter of deciding for one side and against the other. Instead, we attempt to negotiate as much autonomy as we can for the patient in terms of what is actually feasible, allowing obviously detrimental autonomy only when the boundaries of the law offer us no choice.

Each of these negotiations is inherently uncomfortable, and the results are usually at least mildly unsettling for those concerned, but such is the nature of life. In his book The Doctor as Judge of Who Shall Live and Who Shall Die, Helmut Thielicke indicates that the only reliable feature of this muddy part of life is that uncertainty, that discomfort, and concludes that the only time we really need to worry is when we are absolutely convinced we are correct.

Thus, we in hospice care are committed to this shifting plane, this negotiation of relative good, and this ongoing attempt to enable an outcome that does the least damage to all concerned. I doubt we will ever have the luxury of absolute certainty.

Dr. David Tribble is Alive Hospice’s chief medical officer.

Ruth Williams

One thing we grief counselors will say over and over is that grief is a very individual experience. We are one-of-a-kind people and therefore, understandably, our grief is truly one of a kind. And, no matter what the relationship is, there are usually layers of effects felt by the person who is grieving.

I was with my own family this weekend for a wedding. I’m the only sibling (of four) who lives in Tennessee, so the wedding was out of state. This was the first wedding since our mother passed away last summer. She would have enjoyed it. The young groom was born the summer before our father died. We all remember (years earlier) gratefully passing around this sweet little baby and enjoying smiles among the tears. Being there to witness the joyous event of this young couple’s marriage brought lots of assorted feelings to the forefront.

Our father was only 61 when he died. One of my sisters turns 60 in a few days, so we celebrated her birthday while we were in town for the wedding. I happened to remind the others that he was “only 61” when he died.

Many adult children are surprised and a bit shocked when, after their parents’ deaths, they instantly become the oldest generation in their families! Relationships change, and sometimes, even the distribution of power and influence may change in families! Even objects once treasured by family members may hold no value for the next generation. And, on the other hand, things not at all treasured by one generation may become invaluable to another.

We’re all different, and we all experience the many layers of grief in our own unique way. And, whether a death was experienced 27 years ago or less than a year, the ripples may continue to be felt.

Ruth Williams is a counselor with Alive Grief Support Services, the bereavement support program of Alive Hospice.

If you haven’t submitted an entry for the National Hospice and Palliative Care Organization’s 2010 Photography and Writing Contest and want to, you still have more time! The deadline has been extended to Friday, July 16. More information about the contest is available online, including guidelines and other pertinent information.

From the NHPCO: “In this year’s contest, we are looking for photographs, essays and poetry that illustrate the value of hospice and palliative care to those who may not be familiar with this special kind of care.”

Good luck!

The July 2010 edition of Palliative Care Grand Rounds, hosted this month by Eric Widera at GeriPal (Geriatrics and Palliative Care Blog), has been posted. Palliative Care Grand Rounds is a monthly round-up of compelling blog entries focusing on hospice, palliative care and grief matters. Check it out!