Your are reading Part 4 of my series, “What to expect from your hospice nurse.” To gain full perspective, I encourage you to start from the beginning by visiting the series landing HERE.

Today, we are going to discuss your hospice team. I made slight mention of your hospice team in part one of the series. Today, I will provide you with some additional information.

Your hospice nurse does not work alone

It is important for you to understand that hospice does not consist solely of your nurse. There is an entire team of professionals (and lay persons) who are also available to assist you. It is important for you to be aware of this so you don’t develop too much dependence on the nurse. This can happen easily because you will see her the most.

To begin this article, I’m going to introduce you to the most important member of your team. This person is even more important than your nurse.

You have a caregiver

This article has to start with the realization that hospice, in general, is supportive care.

Hospice is there to help, but when you are admitted to hospice, you will be required to choose a caregiver. There are very few requirements to be a caregiver for a hospice patient. Someone just has to agree to the task. This can be a family member, or a close friend. Even if you are functioning well, you need to find someone who will be there for you as you decline and lose the ability to care for yourself.

Many people believe that, at some point, hospice will provide them with twenty-four hour home care. They may also believe that they will be placed in a hospice facility once they can no longer care for themselves. Again, this is not the case. I would direct you back to “Part 2” of this series to review the Four Levels of care that hospice provides. None of these levels include twenty-four hour care for an extended period of time.

As I review the rest of the hospice team, keep in mind that their goal is to educate, empower and encourage your caregiver as they walk this journey with you. Your caregiver will provide the majority of your care as you decline.

In the event that you do not have someone willing, or able, to be your caregiver as your health declines, you have a few options. You can hire private caregivers to care for you in your home. Private home care is generally cost prohibitive. The other option is to be placed into some kind of residential care facility with twenty-four hour care.

Regardless of what you choose, hospice will not be at your home around the clock when your care needs escalate beyond your ability, or the ability of your caregiver.

With that out of the way, let’s go ahead and review the rest of your hospice team.

The Nurse Case Manager

As I mentioned in Part 2 of this series, you will be assigned an RN who will be your case manager. She is the central hub of your care, and she will be primarily responsible for your medical care. She will make visits (at least) weekly to assess your physical condition, and communicate your needs to your primary care physician. That physician will giver her orders, and she will assist you or your caregiver in carrying them out.

My next article will be dedicated to the subject of your nurse case manager. For the purposes of this article, you just need to know that she is your primary contact for hospice.

The Hospice Aide

If I were a hospice patient, this would be the team member I would anticipate the most each week.

Hygiene plays a huge role in how many hospice patients feel. A shower, bath or sponge bath can bring such a sense of well being. The hospice aide is totally optional, but they can really take a load from your caregiver. Most generally, the hospice aide will come 2x per week to provide hygiene services. In general, they are not housekeepers. Some agencies do utilize them for general housekeeping and meal perpetration. This varies widely between agencies.

For the most part, hospice aides make visits with a focus on washing and bathing. This is not someone I would ever recommend you decline.

The Medical Social Worker

You will have a social worker assigned to you as part of your hospice team. Medicare requires that this social worker perform an initial assessment within the first five days you are on service.

There are some misunderstandings with the social worker. In my years of hospice I have encountered a few patients and caregivers who were afraid of the social worker.

I think a lot of people think the social worker is there to scrutinize the care and look for problems in the home. Maybe they even think the social worker is looking for reasons to report activities or actions to authorities.

This could not be further from the truth. The social worker is a resource specialist. They can help you with getting help for anything that is not medical in nature. They can assist with completing things like Durable Power of Attorney for Medical Care as well as help complete applications for additional services provided by state agencies. They can also help with finding caregiving options when needed as I described above.

Your social worker will generally visit monthly, but they will visit more often as needed to help you work through any social issues you may be experiencing.

The Hospice Chaplain

I’m not sure there is anyone less understood in hospice care than the chaplain.

Too many hospice patients and caregivers refuse chaplain services. They have a lot of reasons. Maybe they aren’t religious. Maybe they have their own minister who comes and visits regularly. If they were in the military, then they associate the chaplain with fatal injuries and death.

Let me clear all of this up and explain why you should allow the chaplain to visit.

I have found most chaplains to be great listeners and companions. They are “active listening” specialists. They are great at connecting with patients on a human level. They aren’t there to proselytize or convert anyone to their own faith. They will pray with you if you want prayer. They can read scripture if that is what you want. They will just sit and visit and provide companionship if that is what you need.

Most importantly, they are another set of eyes and ears who can help you, and the rest of the hospice team, catch problems and changes early.

The Bereavement Coordinator

Medicare requires that all hospice agencies provide bereavement services. Bereavement services start at death and run for thirteen months. Smaller agencies will use either the social worker or chaplain to be the bereavement coordinator. Larger hospice agencies will have a full-time bereavement coordinator.

The Medical Director

All hospice providers have at least one medical director. As I mentioned in part 2 of this series, the medical director is either an MD or a DO.

You are not likely to ever meet the medical director. Hospice is not set up by Medicare for the medical director to actually make visits to see the patients. The ratio of physician to census is just generally too high. This isn’t something that is even expected by Medicare.

Some medical directors will go out into the field and visit patients, but these are in extreme circumstances only. It’s not something you should ever expect.

The Volunteer Coordinator

As of the writing of this article, we are still coming out of the COVID-19 pandemic. For the last 3 years, Medicare has waived the requirement to provide volunteers for hospice patients.

Because of this waiver, most hospices have few, if any, volunteers on staff. Most hospice providers are currently working to rebuild their volunteer program in expectation that Medicare will remove the waiver very soon.

Once volunteers return to full status, your hospice provider will be able to provide some limited companionship visits with volunteers. These volunteers are not able to provide any kind of physical care. They are not a replacement for your caregiver. What they can do is sit with you for a limited time while your caregiver runs errands. They can read to you, or play games or just visit. Everything volunteer based is subject to availability And organizational policy.

Ancillary staff

No hospice office is without ancillary staff. All organizations staff their office differently. Most commonly there is an administrator, a clinical director and an office manager. These ancillary staff members provide oversight and other essential functions. They are available to you via phone should you experience service failures or have other needs.

Miscellaneous services

Depending on the size of your hospice, they may have some miscellaneous services. These services could include a massage therapist, a music therapist or other similar therapies. These types of services are not mandated by Medicare. Most hospice agencies do not have these types of services.

Hospice is a robust service, but it is not designed to completely replace those closest to you. As your health changes, the team I describe above will be there to help you and your caregiver navigate all the challenges that may arise.

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James

James worked on-and-off as an LPN for over 20 years. In 2014 he completed a bridge program and became an RN. James became a hospice nurse in January 2015. He lives in the Kansas City area with his wife of over 30 years, 4 daughters and 2 sons in law.