Death isn’t something people like to discuss, but for Cindy Perkins, a community/professional liaison at Harbor Light Hospice, it’s a subject with which she’s very familiar. “A large part of my responsibility is to foster education about the hospice concept of care to the community in general, as well as the professional medical community. There are so many misunderstandings and misconceptions that exist about this type of care, and it’s my job and goal to enable people to understand the true benefit of specialized end-of-life care,” she said.
Coming from a family of health care providers, as well as being married to a long-term care administrator, health care has always been part of her life. But it wasn’t until end-of-life issues hit home that Perkins thought about working in the field of hospice care. “About eight years ago, my father died of pulmonary fibrosis. His disease process was very distressing, and his symptoms were difficult to manage. While the health system was adequately in place, his needs weren’t effectively being met, and the end-stage quality of his life was very poor. I knew there had to be something better. Even though my family was very medically connected, hospice was never presented or considered as an option. Of course, hindsight is always 20/20, but if only I had known then what I know now, his final months, weeks, and days would have been much more positive.”
She said hospice care is a concept rooted in the age-old philosophy of offering a place of shelter or rest to sick and weary travelers in a long and difficult journey. “Dame Cicely Saunders at St. Christopher’s Hospice in London first applied the term ‘hospice’ to specialized care for dying patients in 1967. Today, hospice care provides humane and compassionate care for people with a life-limiting illness who don’t wish to seek curative treatment. The goal is to provide the ways, means, and support so hospice patients may live as fully and comfortably as possible.”
Hospice is a philosophy of care that recognizes death as the final stage of life, Perkins said. “But most importantly, hospice strives to enable patients to continue an alert, pain-free life and to manage other symptoms so their remaining time may be enhanced. Hospice affirms life and does nothing to hasten or postpone death. It treats the person rather than the diseases, and it always emphasizes quality rather than length of life. It’s very family-centered and involves both the patient and his or her loved ones in making health and treatment decisions. Care is provided to the patient and family 24/7, and it can be provided wherever the patient calls home, be it a personal dwelling, retirement complex, or long-term care facility.”
She said hospice care is considered when an individual no longer can benefit from or elects not to have curative treatment or when a physician certifies the individual has a six-month or less life expectancy. Additionally, bereavement support is an important part of their service. “Even after the patient has died, our chaplains provide bereavement support to loved ones for the following 13 months,” she said.
Harbor Light Hospice has offered specialized end-of-life care since 1994, Perkins said. “Along with providing service out of the Peoria, Glen Ellen, and soon-to-be Galesburg offices, HLH also operates in Indiana, Ohio, Virginia, and Oregon. From the Peoria location, HLH is licensed to serve a 13-county central Illinois area, with a concentration in Peoria, Tazewell, and Woodford counties.”
She pointed out that hospice workers know the inevitable prognosis of their patients, but that doesn’t stop the staff from helping those they’re caring for celebrate the value of each day. “Hospice team members take special care to acknowledge birthdays, anniversaries, and festive occasions, and we do whatever it takes to make special dreams come true. We’re hosted ‘room warming’ parties and taken Santa, Mrs. Claus, and Elf around to area nursing homes and assisted-living facilities. Above and beyond the necessary medical care, these are the things we do on a regular basis.”
The most important personality trait for a hospice provider to embody is compassion, Perkins said. “Is hospice care difficult sometimes? Certainly. But our office atmosphere and dynamic is much like that of a big, close, loving family where we can rely on each other when necessary. Those who provide hospice care are quick to tell of the immeasurable rewards they receive each day. There’s really something very special about the relationships forged as our team takes care of those approaching the end of their lives.”
There are several misperceptions about hospice care—among them are the beliefs that it’s only for those who’ve been diagnosed with cancer and that it’s expensive. “Any end-stage illness or condition that presents a limited life expectancy is appropriate for a hospice referral,” she said. “Harbor Light Hospice cares for people with cancer, as well conditions such as pulmonary, heart, kidney, and liver disease; diabetes; strokes; etc. Also, hospice care is covered by Medicare, Medicaid, and many private insurances. For those who qualify go Medicare or Medicaid and the appropriate criteria are met, there’s no expense for the recipient.”
Perkins said a common frustration in hospice work is that referrals are usually made later rather than sooner. “Often, the referral comes so late and the disease process is advanced to the point that the patient and family don’t receive the entire range of benefits. The other challenging aspect is that often physicians are geared toward being more curative. Articles show very little medical school time is focused on death, dying, and specialized end-of-life care. While physicians have their patients’ best interests at heart, sometimes they don’t consider hospice as an option.”
She said if people become more comfortable talking about hospice, referrals will likely be made on a timelier basis, giving people the opportunity to benefit from specialized end-of-life care. “Ironically, I’ve heard Baby Boomers are three times more likely to talk to their kids about sex than they are to talk to their parents about end-of-life issues. All of us at HLH encourage people to talk about their end-of-life wishes. Take time now to talk about living wills and advanced directives and care options while you’re able. Don’t wait until you’re faced with a crisis and are forced to make difficult and emotional decisions. If people need assistance, HLH social workers are always available to assist or make appropriate referrals.”
Because, as Harbor Light Hospice believes, “When cure isn’t possible, comfort always.” TPW