Choosing hospice care is one of the most significant choices a family and family caregiver will need to make for their loved one when a physician orders this stage of care.
There are two options for choosing hospice care, in-facility, or at-home. Hospice care is generally thought to be end-of-life care or until a patient passes away. However, some patients recover enough to no longer qualify for hospice care.
They return home or to a senior care facility. Federal regulations require patients to be evaluated every six months to determine if they remain eligible for hospice care. Below are my experiences with choosing hospice care for my mother.
Stand-alone hospice care facility is most often provided two ways; as a hospital-based or nursing home-based entity, or by a commercial entity. This hospice facility is a full-care facility resembling a hospital with all the necessary health care modalities to make the patient and their family members feel comfortable. Family members may not always agree with the treatment or medication protocol, but staff are trained to provide information and consultation. One of the most critical factors of any hospice care is for the family to be involved in the end-of-life process. Hospice services (regardless of the type of hospice) include bereavement therapy for family members. The inclusion of a social worker as part of the hospice team is a valuable addition.
In-home hospice care offers the same services as in-facility to the family. The main difference is that in-home hospice care is mainly under the supervision of family members. Hospice staff are available 24 hours a day to aid the family and patient.
One of the main components in choosing hospice care is the team of professionals assigned to care for your loved one. In both in-home and in-facility hospice care, the hospice team consists of a physician, a lead nurse, a social worker, and a chaplain. The social worker often doubles as a bereavement specialist. Additional team members may include volunteers who provide brief respite and hospice aides who might help with non-medical tasks. There are regular briefings in both settings with team members to update family members on the plan of care and to respond to questions.
In my book, One Caregiver’s Journey, there are descriptions of the clear differences between the two different types of in-home hospice providers I encountered. I was the sole caregiver for nearly a decade to my mother, who died in my home at age 102. At the time of her death, my mother was a patient in a hospital-based hospice.
Lutheran Hospital Hospice offers both in-facility and in-home care. We had many family members who passed away in that facility, but my brother and I chose to keep our mother at home. Why? It became increasingly difficult to visit family members in the facility after several had died there. While the facilities are pristine and clean, and the staff are always professional, the thought that this facility represents end-of-life care was troubling to us. The most prevalent consideration in choosing hospice care at home was my mother’s wish to remain at home.
In my book, you will read that my mother was in physician-based home care for the last three years of her life. She did not leave the house and had monthly medical visits by either a doctor, physician assistant, or a nurse. My mother passed away in May 2017. In 2016 she had a period when her health was failing, and the physician-based service suggested we have her evaluated for hospice.
I contacted the Lutheran Hospice, and they sent an intake nurse. The nurse arrived, did a brief examination of my mother, and asked many questions.
That day my mother was singing in Italian and very cognitive and asking many questions of the nurse. She continued singing and talking while the nurse conducted a brief examination. In conclusion, the nurse shook her head, looked over her glasses, and said, “You know she doesn’t qualify.”
In 2017 my mother’s health deteriorated after she was diagnosed with congestive heart failure. The head of the physician-based home care entity was also associated with a private hospice, and the doctor suggested I entertain hospice care for my mother. The private entity sent an intake worker who set off alarms as soon as she entered my home.
She was neither a nurse nor a medical professional. She was unable to answer any of my questions and could not tell me the specialty of members who were on their care team. She talked about herself and not about the services the entity offered to families.
Most of all, she was not interested in my mother. I was not happy, and the next day, I lodged a complaint with the entity CEO, whose first question was to ask if she was wearing a lab coat and a name tag – no to both.
My advice is to heed red flags.
If the person acting as an intake specialist is not a medical professional and has no knowledge of the hospice they represent, do not sign your loved one up for that care.
My mother’s health continued to decline, and in April 2017, I contacted the hospital-based hospice and asked that the original intake worker return. The nurse was able to compare my mother’s health on her first visit with her health on this visit. My mother’s declining health made her a candidate for home-hospice. I was a nervous wreck while the nurse contacted the facility doctor advising of the examination and diagnosis and set up the hospice team providing me with names and phone numbers. One of the hardest decisions a family will make in choosing hospice care is to sign the intake papers. This is when a family comes to the realization that this is end-of-life care. The nurse consoled me while she explained the physician-based entity would not provide services in the future, and all medical services were now part of the hospice continuum of care. The next day hospice team members began arriving for introductions. I opted not to utilize the chaplain as our parish priest visited Mom regularly. Hospice provides all medical supplies. We did not opt for a hospital bed, but they provide beds, wheelchairs, and all medical assistive equipment. They are responsible for all personal hygiene supplies you will need. The box with the controlled substance arrived with instructions to refrigerate and use only when ordered by a nurse. And thus, the short one-month journey with hospice services began.
Shortly after the hospice services began for my mother, the head nurse introduced us to another nurse who would share in the lead duties.
Let me add some context to this. One of the reasons families opt for in-facility care is they do not like the thought of strangers in their home or to be responsible for this stressful care. To be sure, some days, there is a steady parade of nurses if the patient is having a difficult time. There are also scheduled visits and days when no one from hospice is in your home.
My first realization of the benefits of this service was when I found Mom lying in a wet bed, and she was unable to move. It was midnight when I called the hospice asking how to change a wet bed with someone in it. The nurse said she was having a slow night, and she arrived at my door in 30 minutes. She showed me how to change the bed, she put my mother in dry depends, and she was so kind, happy to help, and professional. In the morning, another nurse arrived to check on both of us and to bring more supplies.
As my mother’s strength declined, the decision was made to catheterize her so she would not get up. She was unable to stand any longer to use a walker to get to the bathroom. She continued to decline, did not want to eat or drink, and began experiencing pain. I received instructions to administer pain meds.
The hospice journey in my instance was filled with people who knew compassion and kindness. We were grateful.
My mother was in hospice care for a total of 30 days until she passed away in her bed. The co-lead hospice nurse was with me when she died. The social worker arrived shortly to sit with my brother and I until the mortuary came to take her. They did not leave us.
Choosing hospice care is not easy. However, it is one of the most important decisions a family will make for a loved one, so it is important to educate yourself with a facility, their staff, and their management. The decision to die at home or in a facility is a personal one; there is no right or wrong decision. Choose wisely.