March 30, 2021
From the Experts: Hospice Questions With Dr. Tom Mouser
Dr. Tom Mouser, EveryStep’s chief medical officer, is well-acquainted with the many myths surrounding hospice care…
“Hospice is only for people who have a few hours to days left to live.”
“Hospice is expensive and takes place in a sterile, cold building.”
“Those are just a few of the myths and preconceived notions surrounding hospice care.”
But those statements, Dr. Mouser notes, simply aren't true. Hospice is not about dying. It's about living what time you have left to the fullest.
Yet, for families and their loved ones, the idea of beginning hospice services can be overwhelming and scary. EveryStep is here to help.
If you or a loved one could benefit from hospice service, please reach out to EveryStep or complete a find care form.
Check out Dr. Mouser answering these questions in-person on our Instagram page. Click on the "From the Experts" story highlight.
Why Should I Choose Hospice?
Q&A with Dr. Tom Mouser
Why should I choose hospice before I am in my last hours to days of life?
People have a misunderstanding that when they enter into hospice that they are going to start dying faster, or that it will shorten their living.
Since 1982, when hospice became a medical benefit, data has shown otherwise. In fact, when people enter hospice, they receive care more tailored to the needs of serious illness. They get less risky or harmful procedures, hospitalizations and medications that usually end up shortening their lives. They live longer, but at a much better quality of life.
Hospice is less about dying and more about living life to the fullest for any amount of time you have left. It’s unfortunate when someone comes into hospice care and we don’t have the opportunity to magnify that quality of life we could have if they enrolled sooner.
Most people who are end-stage have already decided that they don’t want more aggressive treatments, hospitalizations and time away from family. They have everything to gain and nothing to lose to let hospice come in and help.
Is hospice able to provide as many services as palliative care?
Many people who qualify for hospice based on their disease state often ask if they can instead receive palliative care with the misunderstanding they have a shorter time to live.
The reality is that the hospice team is a palliative care team, but with more depth of services and support than what a palliative care clinic can often offer.
That is why palliative care providers are the first ones to strongly encourage consideration of hospice services for those who qualify and have goals congruent to a what hospice can provide.
Is hospice a place/building/location that I need to go to or move to?
The Medicare hospice benefit was designed to allow patients to be able to be with their family in the location of their choice at the end of life.
The main goal of the hospice team is to provide advance medical services in the setting the patient calls home, whether that is a private residence, nursing facility, assisted living facility, a residential hospice facility or a hospital setting for those who need to escalate to that level.
Some hospice providers, but not all, offer hospice homes for patients who require around-the-clock care. EveryStep, for example, offers hospice homes in Creston and Des Moines.
Do all hospices provide equal quality of care and depth of services?
Sadly, not all hospices provide the same depth of service or expertise, which is why Medicare has been increasingly trying to parse out those who are the most excellent from those who have opportunities for improvement.
Medicare offers a “hospice compare” website to help in your choice in navigation. It’s very important to know the important questions to ask regarding the philosophy and delivery of care.
What questions should I ask when considering a hospice provider?
- Are there full-time providers on staff?
- Does the hospice build a care plan around the patient’s goals?
- Does the hospice tailor the medication regime specific to diseases?
- Is the hospice open to advanced therapeutic interventions for symptom management?
- Does the hospice have in-patient hospice facilities operated by physicians credentialed in the specialty of palliative care??
- Does the hospice have full-time, board-certified physicians and providers designated to helping with disease management and navigation of goals of care?
- Do they use a local, community-based pharmacy or a preferred non-local pharmacy?
Is there anything hospice excels at over the hospital?
Yes, hospice has full-time hospice and palliative care providers with a unique and deep skillset in managing symptomology or pain and symptom management using state-of-the-art modalities in a home setting. This is unique as most physicians and providers are uncomfortable with advance symptom management outside of a hospital setting.
What Happens When I Start Hospice?
Who is involved in my care?
Many people are aware that a hospice nurse is involved in their care, but are unaware that the hospice team has a huge delegation of care, from nursing assistants who help with daily care and light housekeeping, to massage therapists and music therapists.
There is a magnitude of services and depth to the hospice team that far supersedes any other benefits known and available through insurance or Medicare, which is why it is so important for those who qualify to understand the myths, misunderstandings and fallacies of hospice.
Is life expectancy shortened by electing hospice services?
The overwhelming number of people live better – and, studies show – often live longer in hospice care compared to peers with similar disease who choose to pursue aggressive and ultimately futile treatments.
What kind of care can I expect from hospice?
We build our care plan directed by the patient’s goals of care, which are defined by what is most important to them. There are often many aggressive treatments that hospice can consider based on those goals, as long as those goals are realistic and attainable and don’t include unreasonable, heroic medical interventions that can’t be sustained in the hospice care plan.
One of the most beneficial conversations a hospice team can have with a patient and their families is walking them through options that exist, the pros and cons, so the patients can choose for themselves what is most in-line with their goals. If their goals are outside the boundaries of hospice, the team will be the first to let them know of their options to revoke services and pursue that which they desire.
Is hospice on call for emergencies?
One of the commonly misunderstood differences between hospice and home care, is that unlike home care, hospice is available 24/7 with emergencies, whether that’s phone support, in-person visits, nursing support or symptom management support.
When I enter hospice am I leaving aggressive medical care behind?
No. Another misconception is that truly, hospice care is and looks like aggressive evidence-based medical interventions aimed at 100 percent at amplifying one’s living and quality of life. Many times, in hospice, we are more aggressive with pain management than what people received in the hospital, and achieve better outcomes.
Does hospice take away my normal medicines?
At EveryStep, our philosophy is that one is living best when all their chronic medical conditions are managed expertly, and that often entails most of their current medications.
Occasionally, we will identify medications that are causing more problems than they are solving and we’ll help educate patients and families so they can make wise choices over which medications to continue or discontinue.
Can I still get things like antibiotics when I am on hospice?
It is not uncommon for patients to choose to continue to treat infections as they arise, or to pursue certain beneficial therapeutic interventions to maintain the best quality of life.
Can I still go to the hospital when I am on hospice?
Most people on hospice have already made the decision they would never want to be hospitalized again, with the one exception being if their pain and symptoms could not be controlled in the home setting.
The Medicare hospice benefit allows for hospitalizations for symptom management. Thankfully, hospice teams, like those at EveryStep, are adept at managing people in their place of choosing, and hospitalization is often not needed.
Some hospices, like EveryStep, do have special state-of-the-art in-patient hospice facilities like Kavanagh House in Des Moines and Greater Regional Hospice Home in Creston that are more ideal than a hospital setting. Hospice teams are highly trained above and beyond what is typical of hospital systems for the special needs of symptom management and support to patients and families.
Can you stop hospice services and go back to curative treatments, if desired, or are you “locked in”?
Yes. The beauty of the hospice benefit is that it perfectly meets the needs of most every patient at the end of life. However, should a patient change their mind on their goals and desire to pursue newly available treatment, or one passed over in the past that hospice cannot provide for, they may revoke services and immediately be back on the Medicare insurance plan.
What about costs?
Does hospice cost anything? What services and medications will be covered by insurance?
Most private insurances adhere to the Medicare hospice benefit, but those with private insurance should check their benefit.
For Medicare recipients, under the Medicare hospice benefit there is no cost for the services, medical equipment, medications, or any medical care received for the patient’s primary condition and contributing medical conditions. Any conditions not covered by hospice are covered by Medicare, therefore there is often no cost to the patient and family.
In some cases, when a patient does not meet Medicare’s guidelines for in-patient hospice care, the hospice provider may offer their in-patient facilities for use as a residential living facility. In these cases, there may be a room and board charge.
It’s advisable to talk to the hospice program regarding how they handle such things, as there may be financial assistance available, such as the support EveryStep offers through its Foundation.
Is there lifetime benefit, or maximum timeframe someone can be on hospice?
No. To qualify for hospice, two physicians must agree and certify that using their best judgement the patient is likely in their last six months of life.
Medicare does not set any limits on the lifetime hospice benefit allocation. However, it does hold hospices accountable to their physicians continuing to certify and re-certify using their best judgement the prognosis for the patient.
If I am discharged from hospice, can I enter service again?
It is not uncommon to see people improve and realize there is more time to live than what was first prognosed due to the high quality of service provided.
Some patients may even go on to be discharged because of stability when it becomes apparent they are no longer at risk of dying. That does not preclude them from future hospice care should the same or a different medical condition or disease threaten their life expectancy.
What is the hospice experience?
What is the most common thing you hear from patients or families once they start receiving hospice care?
“I wish we would have understood what hospice was and had been introduced to it long ago.”
What do patients and families say is the most beneficial thing about hospice care?
Most patients finally get the expert management they need to be comfortable, and most families indicate the incredible relief to know they no longer need to navigate being an untrained healthcare expert alone.
What is the most common surprise for patients and families who enter hospice care?
The failure to die. We do such as good job of providing care that the trajectory of end-of-life slows. People are afraid to start hospice, but when they do, they often appear to have gotten better due to the right care applied to their situation.