Sandwich Smarter: Legal Forms for Families

Hospice Questions Answered

Disclosure: This blog does not constitute legal advice, and is also not medical advice. 

The topic of Hospice Care came up at a recent visit to the doctor’s office with one of our elders.  This gave us great pause……does this mean this is the end??

Our understanding of what hospice care is and what it is not was limited.  In my experience hospice care was only ever brought in at the end of life to facilitate a peaceful passing.  What exactly was this doctor telling us?  We had LOTS of questions!  To start with we needed to figure out exactly what hospice care is….

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According to the American Cancer Society the definition of hospice care is this:

“Hospice care is a special kind of care that focuses on the quality of life for people and their caregivers who are experiencing an advanced, life-limiting illness. Hospice care provides compassionate care for people in the last phases of incurable disease so that they may live as fully and comfortably as possible.

The hospice philosophy accepts death as the final stage of life: it affirms life, but does not try to hasten or postpone death. Hospice care treats the person and symptoms of the disease, rather than treating the disease itself. A team of professionals work together to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice care is also family-centered – it includes the patient and the family in making decisions.”

Although that all sounds lovely this didn’t necessarily clear things up.  The doctor that we met with emphasized the importance of being very active in deciding NOW how a person wants to spend their last days to be instead of waiting until they are SUPER sick and unable to make those choices for themselves.  This also makes sense!  But we needed to do some more research.  Did you know that you can “graduate” from hospice??  

Turns out that you don’t need to be on “death’s door” to qualify for hospice. If you are in the midst of a major illness your doctor can refer you to hospice care.  You will be evaluated by a care team and if they deem you eligible you will be enrolled and your care will be managed by the hospice team.  If your health improves or if you decide you want to go to the hospital to receive treatment you “graduate” from hospice care until such time as you once again need their services.  One of the great benefits to hospice care is the immediate access to your team.  Have you ever sent a message to your doctor and waited days for a response?  Us too….your hospice care team not only responds immediately but they also can expedite the delivery of care items that you may need (ie: walker, wheelchair, medications, etc.).  Hospice care and all treatments provided by your care team are covered by Medicare.  In some instances you may have a small co-pay for certain medications or respite care but the majority of it is covered at 100%.  

Here were some of the specific questions we asked our hospice team and the answers we received:

Are check-ins done in person or via a phone call and/or what does that process look like?

Hospice visits are 1-3 x per week depending on clinically what is going on. It could be scheduled weekly but if a new problem comes up then either the primary nurse or one who is available when needed goes to make a visit. Visits are done in person but sometimes follow up phone calls are done if needed to monitor .

Hospice is on call 24/7 so if needs arise during the evening, night or weekends you can speak to a nurse.

Do you communicate with Drs when determining medicine changes or "who" determines if medications need to be changed and/or adjusted?

When enrolled in Hospice, the attending Dr. is selected by the patient and/or their family.  The Hospice Care Team has standing orders for comfort care and can make adjustments based on symptom management/clinical judgement. The patient and family are always involved in these decisions.  Most Hospice programs have a medical director that can be reached at any time to aid the team in making decisions.

Will we see and/or communicate with the same person each time?

When enrolled in hospice a care team is assigned that manages the client’s care (same person making scheduled visits). However, sometimes nurses get sick, are on vacation or are unable to visit on the day the client needs a visit due to a unscheduled or unplanned need.  In that situation another member of the care team will visit the client.

If we begin hospice does mean that "treatments" will stop and only "comfort care" will be administered?

If someone is on hospice and they get a urinary tract infections they can receive antibiotics. The Care Team will have discussions regarding the burden of treatment vs benefit and it is choice of the person on hospice. The goals are comfort-focused not doing multiple tests, or invasive procedures. When on hospice if someone wants escalated care at the hospital, the choice can be to revoke hospice. It is often unknown what the future holds- the team can assist the family with information to make the right choice for their loved one.

Is house cleaning and/or lawn care something that hospice would cover?

Hospice does not do lawn care but the Hospice Social Worker could provide resources in the community if that was a need. If a home health aid is scheduled their main priority is personal care. There is the possibility that at the time of their visit they could do a load of laundry or straighten up.

After all of our research and the monitoring of our elders’ situation she inevitably decided to go to the hospital to receive treatment for her illness.  I’m happy to report that she is now doing remarkably better and happily back at home.  This research definitely will be useful in what we hope to be the distant future.  We once again learned that it is better to have these “hard conversations” before they are needed so you have the tools and resources in place when you need them.  Our situation may not be universal as each situation is different but hopefully, this gives you some insight into the hospice process and the information you need to do your own research and have your own conversations.