By Janelle Brandon.
In the book “The Long Goodbye,” author Meghan O’Rourke writes about waking one night feeling icy cold and with her heart pounding from a nightmare several months after her mother passed away from colon cancer. Her panicky realization was this: Her mother had died, all those she loved would die and someday, she too would die.
As Meghan realized, death is inevitable. Renowned palliative care physician and public advocate, Dr. Ira Byock, is passionate about improving end-of-life care in this country. Byock believes, “The nature of dying is not medical, it is experiential. Dying is fundamentally a personal experience, not a set of medical problems to be solved.”
Modern medicine has produced artificial devices to prolong life, but has yet to find a way to keep people living with a high quality of life after their vital organs have worn out or become severely diseased. People die. And it is our humanitarian duty to one another to ensure that a dignified life is coupled with an honorable death.
The mission of both palliative care and hospice care is to ease patient suffering and to help the patients and their families feel comfortable at the most painful time in their lives.
Palliative care (which in most cases is received in a hospital setting) is defined as specialized medical care for people with serious or life-threatening illnesses. Palliative care is generally a team approach focused on providing patients with relief from the symptoms, pain, and stress of a serious illness. The goal is to maintain quality of life from the time of the diagnosis onward for both the patient and the family.
The National Institute of Health describes what palliative care strives to provide to the patient:
- Expert treatment of pain and other symptoms so the patient can get the best relief possible.
- Open discussion about treatment choices, including treatment for the disease and management of the symptoms.
- Coordination of care with all the patient’s health care providers.
- Emotional support for the patient and their family.
Joe Halvorson, Registered Nurse and Palliative Care Coordinator for Essentia Health in Fargo, insists that enlisting the services of the palliative care unit in no way means the patient or the family is “giving up” on trying to beat their illness or disease.
“Palliative care may include aggressive treatments for a potentially curable leukemia that involves tremendous symptom burden for the patient,” says Halvorson. “It could also involve advance care planning with someone who has dementia, heart failure, emphysema, or some other disease that, though chronic and usually progressive, people experience while enjoying very full and rewarding lives.”
Halvorson understands the perception exists that palliative care is only dedicated to reducing end-of-life pain. He’s committed to changing this perception through education and evidence.
“The goal of palliative care is not to talk a patient or family out of pursuing treatments,” Halvorson reassures. “There’s no cajoling; no persuasion. We address questions, concerns, or misconceptions; explore the individual’s hopes, goals, and worries; and help the person consider treatment options. My friend and colleague, Nancy Joyner (a palliative care nurse at Altru in Grand Forks), uses the four C’s when caring for patients: comfort, communication, choices, and control. Who, at any stage of a serious illness, would not want assistance and support like that?”
Palliative care doctors, nurses and social workers provide direct services to the individual requiring care. They also care for the patient’s family and loved ones by helping them navigate through financial affairs and providing grief counseling and funeral planning assistance.
“Thankfully, people seldom face serious illness alone,” observes Halvorson. “We seek to address the holistic needs of the family by addressing their questions and concerns, facilitating coping and grief, and encouraging physical self-care. Many people find books like ‘Gone From My Sight’ by Barbara Karnes and ‘Hard Choices for Loving People’ by Hank Dunn to be beneficial and meaningful resources.”
Halvorson suggests that critical conversations about end-of-life care should take place well before a medical emergency strikes. He also recommends naming a health care agent in a health care directive to speak on behalf of the patient in the event the patient is unable to advocate on his or her behalf.
“Dignity is found in the inherent uniqueness of an individual,” Halvorson affirms. “Palliative care does not take a one-size fits-all approach. Facing serious illness can be scary, alienating, uncertain, and uncomfortable. Palliative care providers make a commitment to walking the journey with patients and their loved ones and work to respect and uphold their values.”
“I’m really sorry but the cancer has advanced and we don’t have another option other than starting hospice and focusing on quality care and end-of-life treatment.”
These were the dreaded words Rachael Gray, Detroit Lakes, Minn., heard from her mother, Sheri’s, oncologist last year.
Sheri Felt survived brain cancer 20 years ago, came through a divorce, watched her two children grow up, and pursued a career in nursing. When the brain cancer returned last year, the tumor was operable and oral chemo was administered. Sheri didn’t respond to the chemo and was given six months to live.
One month into the six-month projection, the hospice nurse called Rachael to let her know her mother’s breathing had changed and that she wouldn’t be alive much longer. Rachael and her brother, Zach, joined their mother and played music for her and talked with her, even though she couldn’t respond to them. Sheri died under the care of Hospice of the Red River Valley at Oak Crossing in Detroit Lakes with her children, Rachael and Zach, her mother, and her siblings encircling her on April 28, 2010.
“I am a nurse and have cared for many patients in their final moments and truly believe that they deserve to be as comfortable as possible,” says Rachael. Tricia Langlois, MD, Medical Director for Hospice of the Red River Valley in Fargo, shares Rachael’s sentiment. Langlois is a champion of Byock’s perspective in regard to “dying well” (dyingwell.org) and believes there is no universally right way to die.
“By allowing a person the opportunity to ‘die well,’ on their terms, defined by that individual, hospice care allows the ultimate way to bring dignity to a dying person,” says Langlois.
Kari Dew, Social Work Coordinator for Hospice of the Red River Valley, believes caregiving is the best way for loved ones to bring dignity to the dying. An important part of the hospice philosophy is empowering the family to be the primary caregivers with support from the hospice team.
“Where a patient chooses to die is a very personal decision,” shares Dew. “Often people prefer to be in the comfort of their home, surrounded by their personal possessions and the people who love them.”
Dew notes that an alternative setting other than the home is sometimes a better arrangement. Factors such as caregiver burnout, complicated symptom management, custodial care costs, or simply cost may be prohibitive factors that influence this decision.
“Caregiving is one of the toughest yet rewarding jobs family members will ever have,” shares Dew. “It requires a great deal of patience and support and is the best gift anyone can give a dying person.”
Caregiving may involve everything from day-to-day duties to a long-distance phone call from a loved one. Dew advises caregivers to know their own limitations and be honest about their level of comfort with providing caregiving tasks.
Beth Haseltine, Hospice of the Red River Valley Bereavement Program Manager, assists families and caregivers with coping with their feelings in regard to their dying or deceased loved one.
“Grief is not linear,” shares Haseltine. “It does not follow a nice, straight path. Many people never completely ‘accept’ the loss of their loved one, but accommodate it into their life.”
Some of the individuals Haseltine has worked with who’ve experienced loss feel that if they accept the death it means they agree with it. Instead, they acknowledge the loss and learn to live their life without the physical presence of the person who died.
Hospice care aims to manage medical issues and symptoms (pain and discomfort) and also manage the emotionally and socially complex issues the patient and family face during the final stage of life.
“We are able to keep the patient comfortable from disease symptoms while providing psychological, spiritual, and social comfort,” says Langlois. “This approach greatly enhances the time the patient has left with their family. We have the right to live with dignity and die with dignity. The choice is ours to make.”
In Byock’s article “Dying With Dignity,” he states, “Most of us will be physically dependent and intimately cared for by others before we die. This fact does not destine us to become undignified. It simply confirms that we are human.”
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