Guest post by Hallie Kasper, MSN, PCP-BC, ACHPN, CPHON
Director of Palliative Care at Good Shepherd Community Care
Hospice care falls under the umbrella of Palliative Medicine. And, thus, is easily confused with palliative care, which also falls under Palliative Medicine (learn about differences between palliative care and hospice). The goal of this article is to further explain the different locations of where hospice care can be delivered and things to consider when making this decision for yourself or loved one.
First, let’s look at the key elements of hospice. Hospice provides holistic and comprehensive care of patients and their families at the end of life. This care involves a vast interdisciplinary team who are experts in the physical, psychosocial, spiritual, and cultural aspects of dying.
- For people, who are expected to have less than six months to live. Although, some people stay on hospice for longer than six months
- Comfort-focused medical, psychosocial, and spiritual care for patients and their families
- An interdisciplinary team that includes physicians, nurses, social workers, chaplains, home health aides, volunteers, bereavement counselors, and more
- A shift from hope for a cure to hope for comfort, increased measure of control, and shared decision-making based on what is defined as important to the patient and family
Hospice care can be provided in many settings including at home, assisted living facilities, hospitals, skilled nursing facilities, long term (non-skilled) nursing facilities, and in-patient hospice facilities. You often have the choice of where you receive your hospice care. Unfortunately, preferences can be overridden by insurance coverage or lack of direct care resources (e.g., people without family or community members able to provide day-to-day care may not be able to receive hospice care at home).
Levels of hospice care
Before we get to the details of the locations of hospice, please note the different levels of hospice that exist and terms you may hear your hospice team refer to. You do not need to worry about these details, but here is a general overview of the levels of hospice care as they are often related to the location of hospice.
- Routine care: This is provided when symptoms are not escalating. This is the most common level of hospice care
- General in-patient (GIP) care: A highly-skilled care for periods of symptom crisis provided at a contracted acute hospital, long-term care facility, or licensed inpatient hospice facility
- Respite care: A care option that allows exhausted families to have a break from the stresses of caregiving. The hospice benefit allows for one respite period of not more than five consecutive days of respite per certification (billing) period.
- Continuous care: Round-the-clock short-term nursing care provided in a crisis in the patient’s home
Where you can receive hospice care
Below are the most common locations of hospice care and factors to consider when making the right decision for your circumstances.
1. Home hospice
Home hospice is comprehensive, 24/7 care and support you and your family will receive that will amaze you. An interdisciplinary team, led by your primary nurse, will partner with you and your primary doctor to care for you and your loved ones physically, emotionally, psychosocially, and spiritually--all in your home. Your hospice team will be alongside for the journey to and beyond the end of life.
Important home hospice considerations
- Is it important to you or your loved one to die at home?
- Will 24/7 care be available when needed (by family or private pay)?
- Will essential parts of the house be accessible as you/your loved one declines (e.g. when you/your loved one can no longer climb stairs)?
- Who else lives at home and how will they be impacted?
- Are there any factors that would make having narcotics or other strong medications in the home? If the answer is yes, that does not mean hospice at home is not an option; there are strategies that can address concerns.
Things to know about home hospice
- Home hospice is most often routine level of hospice care. In a crisis, continuous care may be implemented for a limited time.
- While the hospice team will be in and out of the home frequently and will do extended teaching, it is the family, caregivers, etc who are responsible for the care and safety of the patient.
- DME (durable medical equipment), for example, a hospital bed, wheelchair, shower chair, oxygen is brought to you and is covered under the hospice benefit of your insurance.
- If you decide on hospice at home and it is not working, other options are available. Your hospice team will be able to help you/your loved ones figure out a better option.
- Respite care may be elected for up to 5 days at a time (per benefit period) and includes the transfer of you/your loved one to a skilled nursing facility or in-patient hospice facility to give your home caregivers a break.
Learn more about home hospice and what you can expect from this type of care.
2. Assisted living facility (ALF)
All of the factors listed above apply here as well. After all, ALFs are a home to many, especially with the increase in living communities that accommodate the continuum of care for the elderly and ill. However, it is important to inquire about the extent of the “assistance” that is provided at the ALF.
Important ALF considerations
- What are the rules about staff about giving medications?
- Is a nurse available all the time?
- When 24/7 care for you/your loved one becomes necessary, what options does the ALF offer?
- Does the ALF have rules about transfer to the hospital in certain circumstances?
Things to know about ALFs
- Hospice at an ALF is most often routine level of hospice care. In a crisis, continuous care may be implemented for a limited time.
- While the hospice team will be in and out of the home frequently and will do extended teaching, the staff at the ALF and family, caregivers, will share the responsibility for the care and safety of the patient; although the extent of the role of the ALF staff varies.
- DME (durable medical equipment), for example, a hospital bed, wheel chair, shower chair, oxygen is brought to you and is covered under the hospice benefit of your insurance.
- If hospice in your ALF is not working, other options are available. Your hospice team will be able to help you/your loved ones figure out a better option.
- Respite care may be elected for up to 5 days at a time ( per benefit period) and includes the transfer of you/your loved one to a SNF or in-patient hospice facility to give your home caregivers a break.
3. Skilled nursing facility (SNF) aka nursing home
For most insurances, especially Medicare A, skilled nursing care and hospice care cannot be elected/paid for at the same time. In this case, many people are resigned to pay for the room & board for the SNF out of pocket and use the Medicare (or other insurance) to cover hospice care. The bottom line is that many people receive hospice while at an SNF but the financial details may vary depending on insurance coverage. More often than not, there is a large financial burden.
Important SNF considerations
- It is not uncommon for the transition to hospice to occur as a result of hospitalization. In this case, ask the social worker/case manager for details related to insurance coverage if you are considering a transfer to a nursing home (also known as SNF).
- You often have options for different SNFs. Again, you can ask for assistance from a hospital case manager or call SNFs directly. Consider a visit to the facility. Ask for references.
Things to know SNFs
- Hospice care in an SNF is most often routine level of hospice care.
- The hospice staff will communicate and collaborate with the facility staff.
- An SNF is sometimes a location of respite level of hospice.
4. In-patient hospice facility
Most often, this location of hospice care is used in conjunction with a general in-patient (GIP) level of care. There are clear criteria that must be met to transition to GIP level of hospice care. Some hospice facilities are in-patient but also deliver care at the routine level of care. In this case, the cost room & board at the facility is not covered by the primary insurance. This is called residential in-patient care.
Important in-patient hospice considerations
- Location of the in-patient facility. Is it close enough to family that wants to visit regularly?
- While most in-patient hospice facilities are home-like, it is not home. Just something to consider.
- If you are eligible for GIP at an in-patient facility, where will you/your loved one go if you/your loved one no longer meets GIP criteria? This does happen.
Things to know about in-patient hospice
- GIP (in-patient) level of hospice is implemented when symptoms are not able to be controlled in other hospice settings and 24/7 skilled nursing care is required.
- GIP level of hospice may be at an in-patient facility, long term care facility, and some hospitals.
- In-patient hospice facilities are “home-like” and are typically welcoming to all visitors, pets, decorations/mementos from home.
- GIP level of care at a hospital or long term care facility will vary in appearance and resemblance to a typical hospital room.
- This option of hospice care puts the day to day care of you/your loved one on people who are not your family or community.
- GIP is not appropriate just because the end of life is imminent. Clear criteria, defined by your insurance company, must be met.
I hope that is article clarifies where hospice care is delivered. It is logistically complicated at times and can be impacted by factors out of our control. But being informed and planning ahead is critical as you or your loved one begins the hospice journey.
Making end-of-life wishes known
Whether you’re researching hospice for yourself or someone you care about, it’s important to discuss options as early on as possible. When it comes to settings of care, what trade-offs is the individual willing to make? What is non-negotiable? Does the preferred setting of care align with the reality of their finances, resources (e.g. home caregivers), or proximity to loved ones?
Beyond settings of care, it’s critical that the individual's chosen health care proxy (healthcare power of attorney) and family members understand what types of end-of-life interventions (e.g. CPR, breathing machines, artificial nutrition/hydration, being transferred to the hospital, focus on managing pain, etc) are wanted or not wanted when time is short. Documenting and expressing these preferences with advance healthcare directives can ensure these wishes are followed, especially if the person becomes incapacitated as their illness progresses. A lack of planning can result in conflicts among loved ones, especially when tough decisions have to be made in the absence of documented wishes.
The best way to do express these wishes is by creating a comprehensive end-of-life plan to document one's preferences for healthcare, estate, funeral, and legacy decisions. Planning is a final gift to the people we care about most. Taking care of this planning ahead of time can also provide a great sense of peace of mind for the person transitioning into hospice care.
Anyone can create a free end-of-life plan with Cake (you’re on the Cake blog right now), then share 24/7 secure access with their loved ones. With Cake, loved ones can access all your important documents and decisions to fully honor your final wishes. Life is unpredictable. Planning with Cake is a good idea for everyone —healthy or ill, young or old.
Create a free Cake plan to get started.
Hallie Kasper, MSN, PCP-BC, ACHPN, CPHON
Hallie is a nurse practitioner and Director of Palliative Care at Good Shepherd Community Care in Newton, MA. She is certified in both hospice & palliative care and pediatric oncology. Over the past 18 years, Hallie’s affinity for end-of-life care has driven her professional journey. As a member of the Good Shepherd Community Care management team, a Hospice and Palliative Care Nurse Mentor, a community board member, and now a professional blogger (who knew?), she is thrilled to share and expand her knowledge and passion for early and comprehensive palliative care. Hallie lives in Needham, MA with her husband and teenage daughter and son.