Many people think that hospice care is only for patients who are in a “hospice house” or their own home. This is not true. Hospice care is also provided in Assisted Living Facilities (ALFs) and nursing homes. Assisted Living Facilities provide an intermediate level of care for people who need assistance with their daily activities but wish to remain as independent as possible for as long as possible.
It is true that assisted living residents who are terminally ill often require care beyond what the facility can provide. Sometimes they may be better served in a hospital or nursing home, but many times family and caregivers feel it is best if the patient is allowed to remain in the ALF. This is their home – the place they know and are comfortable. The place where they have developed close friendships with other residents and with staff.
By selecting hospice care, ALF residents may be able to remain in the facility during their last months of life. Hospice care is typically provided by an outside agency, not the assisted living facility. Both organizations must work closely together to provide the best possible care for the ALF resident. Good communication between the family, the assisted living staff, hospice staff and paid caregivers (if they are involved) can make all the difference in the hospice experience.
Hospice care is most beneficial when it is elected as early as possible.
The original premise for hospice was that patients would receive this type of care for approximately six months prior to death. Making the decision to choose hospice earlier allows the patient and their loved ones the ability to live each day that remains with a new hope and new purpose. It also allows adequate time for symptom and pain management and the development of a trusting relationship with their hospice team. Hospice social workers and chaplains are also available to help work through the multitude of challenging relationships and situations that are common at end of life. Your hospice team has a depth of knowledge and experience with end-of-life matters that others simply do not have. They will be there to answer your questions and help you be better prepared for this journey.
Knowing when to elect hospice:
- The resident’s health is declining – they may have experienced falls, multiple trips to the Emergency Department and/or hospital, and are spending more of their time sleeping or in bed.
- The worsening of their symptoms is affecting their quality of life – it is no longer easy for them to leave their room or participate in facility activities.
- They are losing weight because they forget to eat or it is too difficult for them to make it to the facility dining room.
- They need more support – they are having increased difficulty managing all aspects of their daily activities (bathing, dressing, etc).
- They are experiencing increased shortness of breath or pain with any type of activity.
- They have been diagnosed with a terminal illness and have decided to stop aggressive/curative treatment.
- Their doctor says that there is nothing more they can do to make things better.
If you think that it may be time to consider hospice, begin by educating yourself. Here are questions you can ask your Assisted Living Facility to learn more about their comfort level and willingness to work with hospice:
- Have they worked with hospice providers before?
- How many residents have used hospice?
- How do they handle coordination of care with the hospice?
- Is their staff comfortable helping out when a resident is nearing the end of life?
- How much care and what kind of care is the facility able to provide as the resident continues to decline? (Perhaps they are able to provide additional supportive services for additional cost. If so, what are the services and what will the cost be?)
- Is there a point at which the ALF will be unwilling to let the resident stay there any longer? If so, what is that?
How do hospice and an ALF work together?
The hospice team works with the patient, their loved ones and the ALF to develop an individualized plan of care to best meet the patient’s needs. This plan will include all members of the team that will provide care, the frequency of their visits and the care that will be provided. The hospice team has regular meetings to discuss each patient and their plan of care. Please let them know if you would like to participate in these meetings.
Once an evaluation is requested, a member of our team will contact you to determine a convenient time for us to meet you at the Assisted Living Facility. We have staff available to meet with you seven days a week. Our hospice representative will provide detailed information about the hospice philosophy and care and will answer any questions you have. A Registered Nurse will review your medical history, medications and conduct a physical examination. Our team can complete all of these steps as quickly as you and your physician prefer – often in a matter of a few hours.
Recent studies have found that while 65% of patients die within one year of entering a nursing home, and over 50% of patients die within the first six months of nursing home care.
Nursing home residents who are nearing the end of life often have unmet needs with regard to pain, shortness of breath, depression, and anxiety. These patients frequently have emotional and spiritual needs which also need to be addressed. Family members of patient’s not receiving hospice care commonly express concern that they are not kept updated about the condition of their loved one, and the physical and emotional support they are receiving.
Hospice care is an ideal partner to the nursing home to address and meet these important end-of-life needs. Our mission is to provide compassionate care that is focused on the patient’s quality of life. Hospice strives to keep the patient comfortable and their loved ones informed. We are committed to identifying and addressing the needs that the patient and their loved ones identify as most important for them!
Hospice Patient Experience:
Our hospice staff is trained to assess and identify discomfort in patients who may be unable to adequately make their needs known. We then work with the patient’s physician and the nursing home staff to make certain that these symptoms are addressed quickly and in the best manner possible – minimizing the patient’s discomfort and their loved ones’ concerns.
Nursing home residents who enroll in hospice continue to receive supportive services from the nursing home. Through hospice, they gain access to additional services that can enhance their final months. Our care team includes volunteers who can provide additional social interaction and support. Our hospice team also includes complementary alternative therapies such as massage therapy, pet therapy, aromatherapy and music that can be utilized to help the patient be as comfortable as possible.
Proven Hospice Benefits:
Importantly, studies have found that nursing home patients who are receiving hospice services are more likely to have written Advanced Directives in place and less likely to require hospitalization. It has also been documented that while the life expectancy of hospice patients was the same or slightly longer than that of patients who did not receive hospice services, pain management at end of life and family satisfaction was significantly better.
Another major hospice benefit is bereavement services that are available for the patient’s survivors. This type of support is not normally available as part of nursing home care; however this supportive care is an essential component of hospice. Bereavement care provides a variety of services to survivors including personal visits, written information about the grief process, and grief support groups. Utilization of hospice services provides the nursing home patient and their family with a significantly improved end-of-life experience.