There are many misconceptions about this very valuable kind of care. Many people think hospice is just for the last weeks or days of a person’s life, but accessing this care much earlier can bring a higher quality of life for the loved one who is ill. Often people can and do suffer less pain, have more ability to talk, eat, interact, and enjoy their family and friends when hospice is started. Going into hospice care does not mean you are “giving up” on your loved one. It means you are committed to the best possible quality of life for that person, however long it may be.
This is because hospice focuses not only on improved physical comfort for the patient but their emotional wellbeing too–and that of their caregivers. When a loved one is in the final stages of a disease and will not benefit from further treatments, the hospice team provides compassionate care and a great deal of knowledge and experience that can support the family in their daily caregiving.
Hospice care addresses the whole person and their symptoms while accepting death as the natural end of life’s journey. Hospice care is also family-centered, the family members and the patient are all involved in all decisions about care. The hospice team comes to where the patient is – usually at home–with the goal of serving their physical, psychological, and spiritual needs and those of the family unit. Also, important to note, leaving hospice and returning to physician-based treatment is always the patient’s choice.
When should hospice care start?
Generally, hospice care begins when, according to a physician, the person will die from their illness in about six months or less without intervention. Additional signs that it is time are:
- The patient is rapidly declining despite medical treatment:
- weight loss
- mental status decline
- inability to perform activities of daily living
- The patient is ready to live more comfortably and forego debilitating treatments aimed at prolonging life.
Palliative care describes much of the same comfort-based symptom management care as hospice but differs in that it does not apply necessarily to end of life. Outside of hospice, it is used in conjunction with active disease treatment such as chemotherapy.
What does hospice care provide?
All hospice providers must offer certain free services as per Medicare requirements. While they have different approaches, these are the types of services offered according to hospicefoundation.org:
- Time and services of the care team, including visits to the patient’s location by the hospice physician, nurse, medical social worker, home-health aide and chaplain/spiritual adviser
- Medication for symptom control or pain relief
- Medical equipment like wheelchairs or walkers and medical supplies like bandages and catheters
- Physical and occupational therapy
- Speech-language pathology services
- Dietary counseling
- Any other Medicare-covered services needed to manage pain and other symptoms related to the terminal illness, as recommended by the hospice team
- Short-term inpatient care (e.g., when adequate pain and symptom management cannot be achieved in the home setting)
- Short-term respite care (e.g., temporary relief from caregiving to avoid or address “caregiver burnout”)
- Grief and loss counseling for patient and loved ones
Compassion and Communication
The hospice nurses and team members have lots of experience with the end of life, and they know that addressing the needs of the family is part of their job. They can bring great comfort by talking with you about your grieving process as you come to terms with the loss of your loved one.
Being a caregiver is an exhausting and sometimes overwhelming job. The hospice team can give you information on the patient’s medications, use of equipment, how to dress or bathe your loved one without hurting them or straining your back, and what to expect week to week as illness progresses.
The fact that they are available 24/7 to answer your questions, or come to your home to help, relieves a lot of stress and worry. Even in the middle of the night, you are not alone in this. The primary caregiver is also often relied upon as the expert and expected to inform all the other family members about the patient. This is a big burden that can be lifted when all these questions can be answered by the professionals on the hospice team.
Many hospice services hold regularly scheduled meetings, often led by the hospice nurse or social worker, keeping family members informed about the loved one’s condition. There are often complex relationships and unresolved feelings surrounding the death of a family member. Everyone wants to be heard and there may be disagreements about the type of care the patient should receive. Relying on the hospice nurses and social workers to make sure everyone feels heard, can prevent resentments from lingering after the death of the family member. These empathic nurses can be there to help you say what you want to say to the loved one while there still is time.
The hospice team will be able to set up visits from the clergy of diverse religious faiths. Renshin Bunce, Hospice Chaplain, and Zen Buddhist Priest agrees with my thinking. “It’s a common misconception that hospice brings death. That is a mistake. Hospice brings comfort. Why not take advantage of the opportunity to know that the end is coming and use that time to tie up all the loose ends and accept the help that is offered. Those who come to us earlier we get to have a real relationship with, and we can maximize comfort, those are the people and families who benefit the most from hospice.”
Caregivers–Take Care of Yourselves
Some hospice services offer respite care so that caregivers can have a break. This might mean having a volunteer come and be with the patient so the caregiver can enjoy a few hours of free time or arrangement for week-long mini-vacations where the patient is cared for in a nursing home or hospital.
And caregivers, be kind to yourself. You are not perfect but you did the best that you could. Forgive your impatience, harsh words, or mistakes.
Hospice offers support for those who are in grief after the loss of a loved one. Professional counselors or trained volunteers support the family by visiting or calling and providing resources for outside grief groups or counselors. These services are often provided for about a year after the patient’s death.
“Endings matter, not just for the person but, perhaps even more, for the ones left behind.”
Atul Gawande, Being Mortal: Medicine and What Matters in the End