"The Conversation..."

Have you ever truly thought about what Hospice is or how it could help you and your family? How would you feel if you or a member of your family needed these services? Would you recognize the need when the time comes? If a healthcare professional were to have “the conversation”, will you be open to have the discussion?

What if I was a doctor and I told you that you could get extra care for your loved one And it’s FREE? The services and staff available anywhere you live include:

• Physician and nurse practitioner services
• Nursing care
• Medical appliances and supplies
• Drugs for symptom management and pain relief 
• Short-term inpatient and respite care 
• Certified Nursing Aide (CNA) services 
• Social work services
• Spiritual care 
• Volunteer participation 
• Bereavement services 

Are these services something that you or a loved one could use? If I told you that this is Hospice, would you shy away? Maybe you would feel uncomfortable, many do. Maybe you would say,” I am” or “my loved one is” not dying tomorrow or we aren’t ready for those services. Most people do not know all of the services that hospice can provide a person or the support that it gives to a family after the loss of a loved one.  

I am a hospice professional who has had many conversations about the “End of Life” over the years. I have presented the topic of Hospice to physicians of all specialties, hospital staff & administration, Skilled Nursing Facilities/Assistant Living Facility staff & administration and to the community. I would say that I am an expert at having “the conversation” regarding hospice. My conversation can and will change the lives of people on a daily basis. I LOVE what I do for a living because I help people. Even so, I was not fully prepared to be part of “the conversation” when it came to my own family.  

I am not a professional writer. In fact, this is my first public article. I decided to write this article to share my personal experience with you. I am doing this, not for sympathy, but with the hopes that I help educate more people on this wonderful service that we are all entitled to receive.

MY STORY:

Last year, my father died on February 7th, 2015 (62 years old of Mesothelioma) and my Stepfather died on November 5, 2015 (74 yrs old to COPD).   I lost the two most influential men in my life within the span of 10 months. And I experienced, on a personal level, the benefits of Hospice, and what it takes to be ready to be on the other side of the conversation.

My father (Jerry) was a blue collar man from blue collar suburban Philadelphia neighborhood. He was an entrepreneur, who started his own company in HVAC. As do most business owners, he worked long hours, including nights and weekends to provide for his family. He never seemed to get sick, always in good health. Except for that one time in January 2014 when he was so sick, that he took himself to the hospital. He was admitted into a South Jersey hospital with “pneumonia” and was diagnosed a month later with Mesothelioma. It was a major blow to all of us.

He went to the best specialists in Philadelphia and went through treatments to help shrink the cancer. As a family we spoke to the Thoracic Surgeon who recommended that we have an experimental procedure that would remove the lining of the lung where the Mesothelioma resided. We were told of many success stories of people living longer after the surgery, however, those people were the minority. The reality of this disease is that it is “terminal”, there is no cure.

Late September 2014, my father had the surgery and was in the SICU for what felt like years. He struggled with the recovery and was eventually released from the hospital to go home. When he got home, he was greeted by his dogs and the comforts of his familiar surroundings. However, that did not last long. Complications developed and he was soon back in the hospital. From the hospital to a nursing home …

Friday, February 6, 2015, almost year from the day, I received a call from my stepmother. My father was taken to the Emergency Department where this all seemed to begin. This time it felt different… I went to the hospital right away, looked at my father and stepmother and was deeply concerned. After many visits from nurses the doctor came in the room to review his case with us. I saw the expression on the doctor’s face and everything started to move in slow-motion. As the doctor sat down I knew what he was going to say… and he did. “Mr. & Mrs. Schiavo, there is nothing more that we can do for you. The cancer has spread and we are recommending hospice to keep you comfortable for whatever time you have left.”

Within 30 minutes of that conversation, I packed my father up in my SUV, coordinated hospice care (equipment, medication, etc) and took him to my home. As we pulled up into the driveway we were greeted by my sisters, aunt, uncle, cousins and my mother and stepfather. We shared stories, laughed and cried (a lot).  

February 7, 2015 around 1:00PM, less than 24 hours from the conversation, my father passed away without being admitted onto hospice.

I continue to play the entire year out in my head where there were many opportunities to have “the hospice conversations”. Throughout this process, not one healthcare professional discussed hospice service as an option as the disease progressed, especially since there is no cure for this type of cancer.

Having, “the conversation” is what I do every day and I was too late for my own father. I feel horrible that my father passed without the hospice service and I made a promise to not let that happen again. 

My stepfather, Michael, was also a blue collar man. An Army veteran who later worked for Otis Elevators, and coached track for 40 years. He was man who marched to his own beat and had his own personal challenges throughout life but he had perseverance and self respect to get through those times.

Michael believed that school sports and activities are important and that they instill self confidence, a strong work ethic, competitiveness and the ability to get through life’s failures/loses. As Michael got older he became a gentile, compassionate, caring person. He helped the kids he coached by getting them equipment that they could not afford, provided them with encouragement to be successful in their academics and even bought some prom dresses and tuxedo’s so these kids could go to their proms. He made such an impact on their lives that as they grew into adults they still came around to visit just to say hello.

Michael was diagnosed with a couple “chronic” diseases that eventually become more difficult to manage as the disease progresses into its advanced stages. He suffered from CHF and COPD. As some of you may know, these diseases can be well managed with medication but once the disease becomes more advanced the symptoms become more difficult to manage which lead to increased visits to the Emergency Department and even being admitted into the hospital for a few of days.

November of 2014, Michael was diagnosed with Stage 3 Lung Cancer. In January 2015, he decided to go through treatments to reduce the size of the mass, however, the cancer didn’t shrink. Throughout the process none of the doctors broached the topic of hospice during any conversations.

June 2015, to my surprise, my mother and Michael spoke to me in private to ask about hospice and the services benefits. After that the conversation wasn’t brought up again.

We went on our annual vacation to Ocean City, NJ and Michael was on continuous oxygen and would struggle making it to the beach. When we got home from vacation the vicious cycle started (to the hospital, home, back to the hospital, to a nursing home, back to the hospital and so on). At one point the Palliative Care nurse came in to discuss palliative options. I thought to myself, that it would be better that they hear this conversation from someone other than me. The nurse did a nice job with “the conversation” but either my mother and Michael didn’t understand or they didn’t want to “give up hope.”

As the weeks went on, I could see the stress, worry and anxiety dripping from every tear that my mother wept. One day my mother said to me, “George, I just don’t know what to do.” My heart sank and I had to have “the conversation.” Did my mother agree to the services right away, no… and that is ok. Eventually, she and Michael did agree. After, Michael was on service for a week, I could see my mother having less anxiety and stress. That week, she said to me, “George I wish we would have done this sooner.” The fact is, that 99% of people that utilize hospice wish they used the services sooner.

On November 5, 2015, Michael passed away having been on hospice services for a little over 3 months. Not once did he go into the hospital while he was on hospice. He was very alert, walking, talking and entertaining many guests in their home. Best of all… he looked happy to be home and stay there. During our many conversations, I asked how he liked the staff. He responded, I love both the nurse and aide, they are so attentive to my needs. When your aide, Ayo comes to care for me you can tell she really likes her job.” I asked, “how do you know that?” Michael responded, “you can feel the love and care when she is delivering the care.”

Michael passed away right before Thanksgiving and he was honored by over 800+ people.

Hospice is the most underutilized service in our society and the topic is avoided and pushed off for another time. Hospice has so many benefits for those that need it and more importantly provides support for the family through the process and after a loved one passes. These services are covered 100% by Medicare and Medicaid, so why wouldn’t you use the services?    

Ten Facts about Hospice Care You May Not Know      

1. Hospice is not a place—it’s high-quality care that focuses on comfort and quality of life.
2. Hospice is paid for by Medicare, Medicaid, and most insurance plans. Fear of costs should never prevent a person from accessing hospice care.
3. Hospice serves anyone with a life-limiting illness, regardless of age or type of illness.
4. Hospice provides expert medical care as well as spiritual and emotional support to patients and families.
5. Research has shown that the majority of Americans would prefer to be at home at the end of life—hospice makes this possible for most people.
6. Hospice serves people living in nursing homes and assisted living facilities.
7. Hospice patients and families can receive care for six months or longer.
8. A person may keep his or her referring physician involved while receiving hospice care.
9. Hospice offers grief and bereavement services to family members to help them adjust to the loss in their lives.
10. Research has shown people receiving hospice care can live longer than similar patients who do not opt for hospice.

Source: https://www.nhpco.org/press-room/press-releases/ten-facts-about-hospice-care-you-may-not-know

I work in hospice, I understand and have seen first hand the positive impact that the services can have on the people who are receiving the care, the support that the family receives during and after their loved one passes along. I am writing this article to share my personal experiences with you. If you take one thing from this article, take this…

Hospice is a wonderful service. Don’t be afraid to ask for help. Let hospice shoulder the stress and allow yourself to enjoy what quality time you have. Please don’t miss the life opportunity because of the fear of having the conversation. Share stories and love the moments.