As the month of November comes to a close and we approach Thanksgiving, it's important that we discuss that this is National Hospice and Palliative Care Month. During this month, hospice and palliative care programs around the country are raising awareness about the important work these organizations do, and no better time to recognize their work than during Thanksgiving week when Americans celebrate the blessings of this country. Hospice is high-quality care that allows patients and their families to focus on living despite a life-limiting illness while palliative care provides a holistic model of care to people earlier in the course of their illness. These organizations and those who provide the services they offer are certainly one of America's blessings.
“Every year, nearly 1.4 million people living with a life-limiting illness receive care from hospices in this country,” said Edo Banach, president, and CEO of the National Hospice and Palliative Care Organization. “These highly trained professionals ensure that patients and families find dignity, respect, and love during life’s most difficult journey.”
In the spring of 2021, Amelia’s mother, Isabella, passed away from cancer at the age of 87. Isabella was born on the Portuguese island of Sao Miguel, the largest island in the Azores archipelago. “Mom would talk about her beloved hometown of Ponte Delgado on Sao Miguel as she got older,” said Amelia. “She loved the beautiful gardens and St. Sebastian Church. In her backyard, she talked often about her beautiful hydrangea bushes and had photos of them hanging on her wall. She loved those flowers.”
Isabella had dealt with serious health issues for the last decade. In 2012, she had a battle with lung cancer and had defeated it. “This fight wore her out and she swore that she would never go through this again, and we as a family were confident that she wouldn’t have to. But then came 2018 and things changed drastically,” Amelia said. “It started with muscle aches, then bruising and we had thought the lung cancer returned. Instead, she received a diagnosis of bone cancer, and she was unwilling to go through treatment again.”
Amelia was initially angry at her mom for making this choice, saying, “why should she choose to leave us when there was a chance that treatment could keep her around longer, but when she looked at me and said that she just couldn’t do it again, with tears in her dark, brown eyes, I had to acknowledge this was her life.”
For the first few months, things went fine. The family tried to get extra time in with her but she didn't want to travel or engage in many activities. All she wanted was to stay in her home and tend to her small garden in the backyard. "Then she started with severe back pain and the doctors found that cancer had spread to her spine and was quite aggressive," Amelia recalled. "The doctor gathered us and suggested that she begin hospice. That's when losing her became real and the sadness and anxiety began to set in."
"The family reached out to our office for some advice," said certified elder law attorney RJ Connelly III. "I had put together an estate plan with their family and I recommended a hospice care provider that we have a tremendous amount of faith in. I explained to them the basics of hospice care and how they can help the family."
"When we called the provider RJ recommended, they came on board quickly," Amelia remembered. "The nurse, Denise, told us that they would stop in as needed but be there for support 24 hours a day. After meeting the team, I could feel the level of anxiety begin to lift and I could also see mom begin to relax."
As Easter approached and the trees and flowers began to blossom, Amelia saw her mom's health take a marked turn for the worse. "I would talk with her about the flowers starting to bloom in the backyard but she just didn't care. Normally, mom was a well-dressed and well-groomed woman, but she began to look uncharacteristically disheveled. On Easter, she struggled just to get to the table with the family. We knew the end was coming soon."
For Amelia and the rest of the family, watching mom die was not like Hollywood movies where there is a level of romanticism attached to a death scene. "Her nurse, Denise, was clear with us, dying was not scripted and at times, it could be downright ugly. Mom didn't look at all of us with our hands folded as she thanked us for a great life and died with a smile. Instead, it was like having an infant in the house, but instead of growing, she was slowly losing her life. It certainly was far from pretty but the hospice team supported us through this every step of the way."
As the end approached, Isabella had to be heavily sedated because of the severe pain, sleeping most of the time. But one morning, things seemed to change. "I arrived at the house and her eyes were open and for the first time in weeks, there seemed to be some lucidity. We talked more that morning than we did for the previous two weeks, we held hands, we even ate a small meal together," said Amelia. "But then she said she was tired and drifted off to sleep and for some reason, in the pit of my stomach, I knew this may have been our final conversation." Two weeks later, she died during the night.
"It was the most heartbreaking yet most surrealistic experience I ever went through," said Amelia. "I don't know where I would have been if hospice had not been involved. Toward the end, mom began to hallucinate and scream out at everyone. The Hospice team was available to our family 24 hours a day and taught us that even hospice cannot add beauty to the situation. In fact, as they told us, death can at times be ugly and difficult. That's what I meant by being surreal, they were truthful, honest, supportive, and they not only helped mom but provided an unbelievable amount of support to the family."
"When you think about it, hospice workers are with families and individuals when they are facing the loss of a loved one, exhibiting sheer raw emotions that in some cases may be out of character for the individual," said Attorney Connelly. "Yet, they handle it with grace, compassion, and professionalism. But as they tell me, everyone has the same need, to be comforted and to feel safe when they are at their most vulnerable."
What it is
This is specialized medical care for individuals living with a serious illness such as cancer or heart failure. Those getting this care usually receive medical care for their symptoms along with treatment designed to cure their illness. The palliative care philosophy is designed to enhance a person's care while focusing on their quality of life as well as the family's.
This type of care is a resource for anyone with a serious illness including heart failure, COPD, cancer, and others. Palliative care is useful at any stage of the illness and should best be sought soon after the serious illness is diagnosed. One of the major advantages of palliative care is the ability of services to help the patient and the family understand the illness and the treatment options that are available.
The palliative care team is made up of professionals from multiple disciplines providing medical, social, emotional, nutritional, and practical support services. To receive this care, medical providers will usually provide the names of organizations that offer these services and if not, ask them for a referral.
Palliative care can be provided in the home, at hospitals, long-term care facilities, assisted living, specialized clinics, or at outpatient palliative care offices. Medicare, Medicaid, and other insurances may cover palliative care and for veterans, the Department of Veterans Affairs may also offer these services.
What it is
Hospice care focuses on the care, comfort, and quality of life for a person with a serious illness who is approaching the end of life. Unlike palliative care, attempts to cure a person's illness are halted in hospice care. Those entering hospice understand that his or her illness is not responding to treatment or is untreatable and the illness is terminal and if it follows its natural progression, will end in death in six months or less.
It's important that once reaching this point, the patient discusses the options of hospice care in order to take advantage of all the services that are offered. By beginning hospice services earlier rather than later, patients and their families may be able to enjoy months of meaningful and comfortable care.
Hospice care can be provided at home or in a facility like a nursing home, hospital, or in some cases, a separate hospice center. The hospice team includes nurses, doctors, social workers, spiritual providers, and specially trained volunteers. They work together to provide the patient, family, and caretaker with the necessary medical, emotional or spiritual support. A member of the team will visit regularly and someone is always available by phone 24 hours a day, seven days a week.
As mentioned earlier, treatment to cure the illness has ceased at this point, however, that does not mean that all treatment has stopped. For instance, if a person is being treated for bone cancer, chemotherapy may stop, but if that person has heart disease that is responding to treatment, that will continue. Hospice patients are also more likely to have their pain controlled and less likely to undergo unnecessary testing or receive medicines they don't need, compared to those who don't use this service.
Finally, the hospice team provides support in many areas to the family and caregivers, but the day-to-day care of the person is the responsibility of the caregivers. The hospice team will coach caregivers on how to provide care and even offer respite care for them, which may be for a little as a few hours to as long as several weeks.
Health Insurance and Hospice
Anyone terminally ill and in the final stages of life can receive hospice care. These services include patients of all ages, the insured and the uninsured. Patients must contact their insurance to determine the exact coverage. If you are on Medicare, they have defined four levels of care that they will cover. These are:
Routine care provides pain relief and other treatments and therapies where you live.
Continuous home care provides more intensive nursing care in your home in times of crisis.
Inpatient care allows you to go to a hospital or other inpatient facility if you need round-the-clock care to treat severe symptoms.
Respite care allows you to be treated in an inpatient facility for a few days to give your caregivers a chance to rest.
A Final Word
"It's important to remember that entering hospice or palliative care services is not a sign that you are giving up or that death is imminent," said Attorney Connelly. "Palliative care may be a temporary support or act as a transition to hospice care, which is designed to make the individual and family's last days as peaceful, comfortable, and dignified as possible for all concerned."
"What's unique about hospice care and palliative care is that these services are not provided at a "place"," Attorney Connelly continued, "it is a service that can occur anywhere that a patient calls home, whether they are aging in place, at an assisted living or in a skilled nursing facility."
Attorney Connelly has tremendous respect for hospice and palliative care providers who have worked with him when clients and families reached out to his office for help as their loved ones faced a life-altering illness or death. "In the field of elder law and the services our offices provide, we all realize just what a gift life is. We only get one time here on earth and it's important that we make the most of it at any stage. That is what palliative care and hospice providers help people do."
If you may be in need of palliative care services, please click on the logo below from the Palliative Care Provider Directory to find palliative care providers in your area.
If you may be in need of hospice services, please click on the logo below from the National Hospice Locator, to find hospice providers in your area.