A Caregiver’s Journey Through Hospice Care

There are many misconceptions about hospice care in the United States. When my mom’s cancer became a terminal diagnosis, I was grateful that I had a working knowledge of hospice services so my family and I could focus on her quality of life and pain management as she entered into her life’s final journey. Here are some useful pieces of information that may help us and our loved one make an informed decision about whether hospice may be an appropriate option for our loved one’s end-of-life care. 

What is hospice?

Hospice is a philosophy of care that focuses on quality of life and compassionate care for individuals with any terminal illness, no matter their religion, race/ethnicity or age. One of the main tenets of hospice care is focusing on caring for the person, rather than curing their illness. However, this does not mean they have to give up on life and forgo all medical treatments. Rather, hospice can help them enrich and savor their last stage of life through deep reflection, focusing on end-of-life goals and creating a holistic and supportive end-of-life experience.

Hospice services provide a multifaceted approach to pain management and medical care, while offering spiritual and emotional support. All services are personalized to the wishes and needs of the individual and their family. Hospice is not one particular place, but instead is typically arranged for wherever a loved one calls home, such as their own private residence, assisted living facility or nursing home. 

Hospice services may also offer short term stays at an in-patient facility for pain management or caregiver respite. When my family and I made the decision to place my mom in hospice care, she was first admitted into a short-term hospice facility so her symptoms and pain could be managed while we decided how to manage her home hospice care. Prior to making this decision, my mom’s doctor had deemed she had 6 months or less to live, which is a requirement to be eligible for hospice services. Although this was a tough realization, and put a finite number on the days she had left, my family and I knew that my mom did not want to be in pain and suffer during her final days. Hospice care allowed us to have more quality time with my mom in a comfortable home-like setting, for which we are forever grateful.

How is hospice care delivered and what services are typically provided?

When starting hospice services, the hospice team develops a care plan that is individualized to meet the needs of both the terminally ill individual and their loved ones. The majority of hospice care is provided in-home, and is typically covered by private insurances as well as the Medicare and Medicaid hospice benefits. The interdisciplinary hospice team is typically made up of:

• Doctors
• Nurses 
• Social workers
• Speech, occupational or physical therapists 
• Trained volunteers
• Clergy 
• Spiritual and bereavement counselors 
• Home health aides

Once the plan is in place, the hospice team works with the family to provide a peaceful and comforting environment for the terminally ill loved one, which can include the following services:

• Teaching the family how to care for their loved one, such as helping with wound care, diapering, bathing and administering medications
• Managing the pain and symptoms of the terminally ill loved one
• Helping set up medications and necessary medical equipment
• Providing supportive therapies, such as physical or occupational therapy
• Explaining and assisting the family and loved one through the psychological, social, spiritual, physical and emotional aspects of the end-of-life process
• Providing grief counseling and supportive services both before and after the death of a loved one, which may include support groups, written materials, telephone calls or home visits
• Providing short-term in-patient care when necessary to help manage difficult pain/symptoms or provide caregiver respite

While at the short-term facility, my family and I met with social workers, physicians, nurses and clergy members that helped us begin to work through our grief and prepare for my mom’s death. We learned so much from their teachings and grace, that it made the inevitability of death a peaceful process. The hospice staff at the facility were there around the clock offering their support and guidance, and would have offered in-home support as well if my mother had eventually been placed back into my childhood home. 

This hospice team, who in my eyes were nothing short of earth-bound angels, helped empower my mom to make decisions about her care until the very end, whether it was figuring out when to stop palliative radiation treatments or deciding when to change her pain medications. Through all of the sadness and grief, we were even able to lightheartedly plan various details of my mom’s funeral while involving her in the planning, which included her request that she and I wear 1990’s prom gowns to her funeral, while we played The Beatles and Taylor Swift songs for her guests. 

After my mom peacefully passed away surrounded by all of her loved ones, our hospice services still continued. We attended bereavement counseling and the hospice members checked in with monthly phone calls. Years later, we still wear our hospice support bracelets that remind us to “Embrace Each Moment” and remember our last cherished moments with my mom. 

Making the decision to place a loved one on hospice care can be extremely difficult and complex. If you and your family feel you have not exhausted all of the available treatment options for a cure, hospice may not be the right choice for you. However, if you would like more information on the topic, below are available resources to check out when the time is right for you and your loved one:

• Informational guide on the Medicare hospice benefit
• The National Hospice and Palliative Care Organization
• Hospice Foundation of America 
• Important information about end-of-life decisions including artificial nutrition and hydration at the end-of-life
• Helpful tools for end-of-life caregiving
• CaringInfo publications via the National Hospice and Palliative Care Organization