by Marlys Hersey

We live in a culture that wants to deny that death exists. We make great entertainment out of it, we make all these slasher movies which in a way trivialize it and don’t make it real. And there’s some horrible statistic where the average person has witnessed you know, like, thousands of simulated deaths on TV and in the movies by the time they become 21, but our culture does not really acknowledge the reality of death.
        – Alan Ball, creator and director of HBO series “Six Feet Under” & “American Beauty”

Hospice care is not about an individual patient: it’s about a family process, about the entire family and everyone in the household. It’s always a matter of the whole shebang, the community members around. It’s the Zen thing – and it’s just the truth.
        – Jean O’Cuilinn, local hospice volunteer

“We don’t help people die,” says Diane Hendrus, Registered Nurse for the Big Bend chapter of Rural Hospice, Inc. “We help people live as fully as they can knowing they have a terminal illness.”

Hendrus is part of a team of four professionals and some half-dozen volunteers that provides hospice services throughout the Big Bend (from Balmorhea to Presidio), including medical care, personal care, grief counseling, and household help for patients with “life-limiting” illnesses – and their families.

You might think that meeting with the pros to talk about their work with the dying would be depressing or morose – yet I found quite the opposite. In early April, I met with the team’s RN, Hendrus, social worker/grief expert Judy Eron, and former client Jo Tucker. (Hospice team members Kim Holden, Certified Nurse’s Aid, who provides personal care and household help, and Marsha Vick, Licensed Vocational Nurse, who makes skilled-nurse patient visits, were not present.). I was struck with how alive, how present each woman was, and how playful and inspirational the conversation. Hendrus, Eron, and Tucker finished each other’s sentences, laughed about catheters, pain suppositories, and too much classical music, and had a lightness and camaraderie about them that forged from the meaningful experiences they have shared.

“My husband and my mother did not have a horrid death,” said Jo Tucker, who lives south of Alpine, and experienced the benefits of hospice care from the local team of providers for the death of both her husband and mother. “There was no agony, no pain, no horrid expression – thanks to hospice…. You couldn’t ask for a better team…. They know how to stay one step ahead…. I knew what was going to happen because they told me…. [My husband] could stay at home, look out the window, listen to music he loved.”

While we may realize – intellectually, anyway – that death is inevitable, it seems that many of us, medical professionals included, have little idea what to expect in the process. Or we’re resistant to admitting that death is near. When faced with a terminally ill patient, many medical practitioners continue to employ any and all medical procedures at their disposal towards the goal of curing the patient, despite evidence that a cure is not possible and that the treatment is doing more harm than good.

In the interest of “not giving up hope” many patients and their families are reluctant to stop “curative” medical measures. Often, invasive surgeries and drug treatments are pursued relentlessly, at great expense and negative impact on a patient’s already beleaguered body (and mind and spirit), while family members stand by in anguish.

Knowing whether – or when – to start or stop such a course of treatment is a profoundly difficult and personal decision for patients and their families. And many people don’t realize they have a choice.

The goal of hospice is to make a patient as comfortable as possible so they – and their loved ones – may enjoy their remaining time as much as possible. As the hospice brochure reads, “The patient and family’s wishes always come first and we strive to achieve physical, emotional, and spiritual comfort for the entire hospice family.” While choosing to stop curative treatments does imply giving up the hope of being cured, this choice allows for a different possibility – that of “living each [remaining] day to the fullest.”

Hospice services include those many of us associate with hospitals or nursing homes: physician-directed care, skilled nursing care, special beds & oxygen, and medication management. This way, a patient can be cared for adequately in her own home, or somewhere more personal. Eron shares the story of two patients in So. Brewster Co. who received hospice care while staying at the Longhorn Ranch Motel, as their personal homes on Terlingua Ranch did not allow for the full range of care necessary. They were able to spend their last days “close to the land they love. Friends could visit, they weren’t in Houston….”

From the Alpine satellite office of Rural Hospice, Inc., based in Crane, TX, Judy Eron (left), with Gracie, and Diane Hendrus comprise key parts of the Big Bend hospice team. (Marlys Hersey)

Once a patient signs up  for hospice, the hospice team becomes their primary medical manager, as Hendrus explains: “We act as representatives for the patient to the doctor, and as representatives for the doctor to the patient. This is freeing to people; they don’t have to sit in waiting rooms anymore. They don’t have to go anywhere unless they and hospice agree that it would be in their best interest. And for things unrelated to the qualifying diagnosis, they can get whatever medical care they want. For example, if the person broke an arm, he/she could go to the ER to get it X-rayed and set.”

And hospice goes way beyond hospital care by also offering personal care and homemaking services, medications for comfort and pain control, social services and counseling, short-term respite and caregiver relief, and 24-hour on-call services.

Family members are sometimes referred to bereavement counseling and support groups. “Guess what?” says Tucker. “Even after [the patient’s] death, the grief books come. Even after they’re gone, there’s more help.”

Most people think of death as an event. “But it’s not. Death is a process,” explains Hendrus, who’s been a lynchpin of Rural Hospice for 4 1/2 years. “It’s not a switch; it’s more like a rheostat…. Like a light getting dimmer and dimmer.” The dying process involves a series of events, Hendrus emphasizes, which follow a sequence. While Hendrus is clear that the hospice team is “not going to make someone well from their disease process,” she says. “We often keep people well and more highly functioning longer.”

While patients with advanced stages of cancer or AIDS are most commonly thought of as hospice candidates, many others qualify: for example, those with an “end stage diagnosis” of dementia, Alzheimer’s disease, cardiac disease, pulmonary hypertension, stroke, kidney disease, liver disease, multiple sclerosis, Parkinson’s disease, or even something as simple as “the dwindles” due to old age may fit the bill as well.

“If you’ve been told you have a terminal diagnosis – in other words, we’re not going to eventually make you better – and within 6 months to a year, you’re not going to be here,” says Hendrus, “it’s time. Once you’ve accepted the diagnosis and are no longer seeking curative treatment, then it’s time.”

If you are not sure if you or someone you love qualifies, you are welcomed to contact hospice and let them help determine if it’s time. “Anyone can refer someone to hospice,” notes Hendrus. “Unfortunately, people are reluctant to ask for help…. Earlier is so much better than later.”

“Jo [Tucker] is the kind of person that would never ask for help,” notes Eron, while Tucker nods. “Because she signed up for hospice, we were just there to offer whatever Jo would accept.”

“They’re just so helpful and informed,” gushes Tucker. “…Compassionate, caring, concerned…. I think of them as angels – informed angels.”

Medicare, Medicaid, and most private insurance policies cover the costs of hospice care. And through the kindness and generosity of many individuals, businesses and church groups that donate goods, services, and funds, hospice endeavors to help people despite their ability (or lack thereof) to pay for services.

Just as no two people are the same, nor are their disease and dying processes, so hospice care is tailored to meet the individual needs of the patient and her family. Still, steps along the way can be anticipated and prepared for – “so there need not be a freak out in the middle of the night,” says Hendrus. “We’re into crisis abatement, prevention…. Death is not a crisis, not a mystery. It’s part of life.”

The hospice team teaches family members, caretakers, anyone involved with the patient, what to look for in the patient that may indicate a change in condition, and a subsequent change in her needs so they can be addressed before becoming acute. The Big Bend’s vast distances and the scant number of pharmacies, other stores and services available make this kind of anticipation and planning crucial particularly for this hospice team, which may be visiting and talking on the phone with many patients and their families at a time; the week I visited with them, the team had 9 patients in their care.

Hospice always has physicians available, but with “standing orders” in place, it’s rarely necessary to try to find doctors at odd hours.  This is part of crisis management and being prepared for whatever may come up, and allows the hospice team to make treatment decisions and implement care whenever necessary.  Medical Director Eileen Conner, MD, is very experienced in the medical management of terminal patients, and along with the patient’s personal physician, rounds out the team for 24/7 care.

Then there’s the non-medical aspect. CNA Kim Holden helps care for the patient’s basic needs: bathing, feeding, etc. “Kim is very hands-on,” explains Eron. “She helps make someone be more comfortable in their skin.”

Moreover, hospice care involves the entire family, not just the patient. “When we take care of a patient,” says Hendrus, “we take care of the family. They dying process may be more difficult for the family than for the patient.”

As hospice volunteer Jean O’Cuilinn explains, one key thing volunteers do is help support the family members by providing “a respite…. As primary caretaker, you never turn off your ears…. You [feel you] can never completely relax.” But when hospice staff or volunteers are there, caretakers may finally be able to go to their room and rest, go to church, see friends, do some errands – just get out of the home.

O’Cuilinn finds the experience of being a hospice volunteer very interesting, and very much in sync with her practice of Zen Buddhism. “You have to go in with a ‘don’t know’ mind. Anything can have happened since you were last there. So you have to have no expectations, no agenda, and be present with whatever’s going on. In one case, the first time I saw [a patient], she was not with it. The next time – the next day – she was completely lucid and sharing stories about her past.”

O’Cuilinn, an experienced chaplain, also finds herself reminding family members what they already know: “That things are fine like they are. That their faith throughout their lives will hold them in good status. That there’s no ‘right’ way to grieve. That it’s okay to be angry, to question God. Even Jesus questioned God.”

As familiar as they are with death and dying, Hendrus, a former midwife and  oncology nurse whose father died suddenly when she was 10, and Eron, whose husband committed suicide after a long struggle with bipolar disorder, both admit there are always surprises. “All the time,” says Hendrus. “The range of things that can happen to someone in their process is endless. People retain their uniqueness to the end.”

Hospice staff and volunteers alike also do a lot of just plain listening – to the patient, to loved ones. “I listen to their story,” says O’Cuilinn. “Sometimes a person just needs to tell their story again, so they hear it and can process…. Maybe I say ‘What was that like?’ …I breathe with them. Feel what’s going on. Most people are very hard on themselves, and have a lot of judgment. If they can feel secure enough to trust that they can say whatever they need to and be heard…? They find they have their own answers. They know what they need…. So that’s what we do – along with make lunch, move a patient on and off the potty….”

In the course of our conversations, each person mentioned how rewarding it was to be involved with someone’s death the hospice way. “It’s actually very uplifting,” says Hendrus.

As Jo Tucker said, “They made it possible for me to have a good experience with [my husband’s] death.”

To learn more about local hospice services or volunteering, call (toll-free) 888/558-2300.

Note: while those mentioned here clearly have a lot of personal experience with death, O’Cuilinn is emphatic that anyone who is interested in being a hospice volunteer need not be an expert: “If you are interested but unsure or uncomfortable about your ability, know that the staff provides training.” You just have to be human and willing to care.” The team says they prefer that volunteers are able to make regular contacts with a patient and family, usually weekly, perhaps more.