One of the most difficult decisions a caregiver will have to make is realizing it is time for choosing hospice care for your loved one. In my book, One Caregiver’s Journey, I describe the personal challenges I had, accepting that my mother was nearing the end of her life. Although she was 102, it is never easy to let go of your mother.
Mom had been evaluated for hospice two times prior to being eligible for services. The first time my mother was evaluated by the hospice that was connected to a hospital, she sang to the nurse and talked for an hour. Obviously, she did not qualify. The home physician service recommended she be evaluated for hospice once her congestive heart condition made it more difficult for her to ambulate.
The hospice connected to this service sent an individual to evaluate mom. It was a lesson in how to be scammed. The young lady was not a nurse or medical professional and did not have anything identifying her with the entity, no badge. She was unable to explain who the members of the hospice team are and their roles. She proceeded to show me videos of former hospice patients, which I know is a violation of HIPPA regulations. I rejected this hospice provider, and I made a formal complaint to the director of that facility. Several months later, I contacted the local hospital-based hospice. The same nurse who initially came to my home and told me my mother did qualify did another intake exam. The intake nurse performed a full exam, asked numerous questions, and made a phone call to the entity administrator who approved the admission. In addition to being 102, and having congestive heart failure, the nurse detected an undiagnosed mass near her left armpit. My brother and had previously discussed options, and we opted for in-home hospice care provider. My mother passed away at home a month later.
The process for choosing hospice admission can be lengthy and complicated, or it can be patient and family-friendly. The nurse explained the hospice team’s role and who would be assigned to us. The team included a nurse, a social worker, and a spiritual advisor. I met with all of them separately and determined that because our parish priest was so close to my mother, I would not utilize the spiritual advisor. Although one nurse was determined to be the lead, the nursing team rotated between several nurses or who was on call when you needed assistance. This same team concept applies in a facility-based hospice unit. The social worker’s role is mainly to support and prepare the family for the end-of-life. The reading materials are very helpful…but I will warn that it does take some strength to begin reading.
Why choose in-home over facility-based hospice?
The key difference between choosing hospice to be provided in the home or in a facility is caregiving. The facility setting is very much like that of a hospital. It is a family preference, and there is no right or wrong choice. Choosing hospice setting, a designated caregiver is responsible for maintaining and monitoring all information and providing all care. Hospice teams are available 24 hours a day to provide advice and may visit in person several times a week. In addition to necessary personal and hygiene supplies, the hospice will also supply hospital beds, wheelchairs, or other assistive devices as the patient may require. There is also a locked box of medications to be kept in the refrigerator, which are administered under the direction of a nurse. When your loved one passes, the facility takes note of all the remaining medications and disposes of them in a prescribed manner. They also retrieve the remaining supplies and assistive devices as an end process. In some cases, the social worker will wait with the family until the body is picked up by a mortuary. When a family chooses hospice services to be provided in a facility, the medications and supplies are monitored by the staff. The social worker is facility-based, and a patient may have their own spiritual advisor stop in to visit. The family receives the same attention and counseling as provided in the home. The base question might just be, where do you want your loved one to die?
In my book, One Caregiver’s Journey, I discuss the process for choosing a hospice. Signing the intake papers was a very difficult decision.
This was a period when I found myself journaling to maintain my stress levels. After my mother got sick on Mother’s Day evening, I was told she was “in transition.” That is a phrase to tell family her time to go to her eternal resting place was drawing near. For the next two weeks there was a steady stream of friends and relatives coming in and out to see her. She remained in bed, sometimes coherent, other times she was sleeping. I did not leave her at night, but slept on the bed next to her, listening to her breathe. Because my mother was 102, it was a vastly different experience for us. We were as ready to let her go to her eternal home as she was to get there. Mom lived a long and beautiful life and hospice made the end of her life very comfortable.
Hospice workers are truly remarkable. The evening after mom started to transition, she lay in a wet bed. I called the hospice for instructions on how to change a wet bed with someone in it. At midnight the hospice nurse on call arrived at my home to change the bed, make mom comfortable and provide instructions. How do you express gratitude for such kindness?
I am aware of people who do not have anything nice to say about hospice workers. There are allegations that they starve family members, that they do not help them regain mobility or that they over-medicate them.
To the naysayers, I will just say – read the literature hospice gives you. You will understand how end-of-life occurs within a body. Your loved ones are no longer hungry or thirsty, the medications make them comfortable and prevent sudden strokes from heavy breathing, and they do not have the strength to get up and walk.
I will always be grateful for the support these Angels of Mercy give to families. It takes a special kind of person to work in a hospice setting. If you find yourself having to choose between in-home and facility-based hospice services, just be sure you are engaged with the protocols and staff.
Frequently Asked Questions About Choosing Hospice Care at Home or in a Facility
Based on the article “Choosing Hospice Care Provider at Home or in a Facility” from One Caregiver’s Journey and supplementary resources, here are some frequently asked questions to help you navigate this significant decision.
1. What is the main decision discussed in the article?
The article focuses on one of the most emotional and significant choices a family can face: deciding whether a loved one should receive hospice care at home or in a facility like a nursing home, assisted living community, or a specialized inpatient hospice unit . The core message is that hospice is a type of care, not a location, and it can be provided wherever the patient calls home .
2. What are the general benefits of hospice care at home?
Home hospice care allows patients to receive care in a familiar environment. The hospice team visits regularly, and the care is coordinated with family caregivers . Key benefits include:
- Comfort and Familiarity: Being in a known environment can reduce anxiety and stress.
- Personal Control: Families can set the tone and maintain daily routines .
- One-on-One Attention: Families often feel more involved in the care process .
3. What are the general benefits of hospice care in a facility?
Facility-based care provides reassurance that trained professionals are always available . Benefits include:
- 24/7 Medical Support: Skilled staff are available around the clock for pain and symptom management .
- Less Responsibility for Families: It eases the physical and emotional strain on family caregivers, allowing them to focus on quality time .
- Access to Specialized Equipment: Facilities are designed for safety and can more easily accommodate complex medical needs .
Key Factors to Consider
4. How do I decide which option is right for my loved one?
There is no “right” or “wrong” choice; it depends on your unique situation . Consider asking yourself these questions:
- Is the home environment suitable? Can it accommodate any necessary medical equipment or modifications ?
- Do family members have the time and emotional resources? Are they able to manage the significant caregiving responsibilities at home ?
- What is the patient’s preference? Where would they feel most comfortable and at peace ?
- Does the patient need intensive, specialized care? This might be more easily provided in a facility .
5. Is home hospice care only for people in their own house?
No. Hospice care at home can be provided in any place the patient calls home, including a family member’s home or even an apartment . The hospice team visits to provide care and support in that familiar environment .
6. What if symptoms become too difficult to manage at home?
Your hospice team is available 24/7 to address worsening symptoms. If pain or other symptoms cannot be managed at home, the patient can be transferred to a facility for short-term general inpatient care or respite care . Once symptoms are stabilized, the patient can often return home .
7. Will I feel guilty if I choose a facility?
It’s completely natural to feel guilt, but choosing a facility does not mean you are letting your loved one down. It means ensuring they receive expert, 24/7 care. It allows you to shift from full-time caregiver to a family member focused on quality time, while professionals manage the medical and personal care needs .
Practical and Logistical Questions
8. What types of facilities can provide hospice care?
Hospice care can be provided in various settings, including:
- Assisted Living Communities: The hospice team works alongside the facility’s staff .
- Nursing Homes: Many nursing homes partner with hospice providers for specialized end-of-life care .
- Hospice Inpatient Units: Some hospices have their own facilities designed to feel like home, with private rooms and family spaces .
- Hospitals: Care can be provided in hospitals, though it’s less common for long-term comfort care .
9. How does insurance coverage work for hospice?
Most insurance plans, including Medicare, cover hospice care regardless of whether it’s provided at home or in a facility. However, reimbursement for inpatient stays like respite care is subject to specific rules. It’s important to speak with your hospice provider to understand the details of your coverage .
10. What questions should I ask if considering a facility?
Before choosing a facility, ask questions such as:
- How does the facility work with my loved one’s current doctors?
- What is the protocol for after-hours emergencies?
- What personal care services are provided?
- What are the rules regarding family visitation and overnight stays ?
Eleanor Gaccetta’s Perspective
11. Did Eleanor Gaccetta care for her mother at home?
Yes, Eleanor Gaccetta, the author of One Caregiver’s Journey, was the 24/7 sole caregiver for her mother for the last nine and a half years of her life, keeping her at home until her passing at age 102 . She resisted moving her mother to a facility because she was committed to providing care at home with the support of nurse visits and doctor house calls . Her book is a testament to that journey and provides a “blueprint” for other caregivers .
