Focusing on the Quality of a Life, Not the Length of a Life
by Don Drake, Connelly Law Offices, Ltd.
The month of November is upon us, it's important that we honor the fact 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," said certified elder law Attorney RJ Connelly III. "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."
According to the National Hospice and Palliative Care Organization, close to two million Americans receive hospice care every year. This care exists in all fifty states, and it’s also available to all Medicare beneficiaries in their own homes. And, to avoid any confusion, while Medicare pays for the Hospice Services in the home, for those in long-term care, it does not pay for the Nursing Home bed itself, which is either through private pay or Medicaid.
Hospice and palliative care providers do much more than care for individuals who are at the end of their lives, as they also provide much-needed support and care for families during this time of grief.
In the spring of 2021, Amelia’s mother, Isabella, passed away from cancer at the age of eighty-seven. 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 in Sao Miguel as she got older,” said Amelia. “She loved the beautiful gardens and St. Sebastian Church. In her backyard, she often talked 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 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 Attorney Connelly. "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, and 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 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."
This is specialized medical care for individuals living with serious illnesses 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, hospitals, long-term care facilities, assisted living, specialized clinics, or outpatient palliative care offices. Medicare, Medicaid, and other insurance may cover palliative care and for veterans, the Department of Veterans Affairs may also offer these services.
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 to take advantage of all the services that are offered. By beginn