What is Hospice? How Do I Get It?

I wish I could say we have advanced as a society in America in the last 30 years around our understanding of how we support a dying person through hospice, whether they are at home, in a hospital, or in a nursing home. The truth is that I find myself starting from scratch every time I am asked to help someone through the dying process and I always start by explaining hospice.

To give you an idea of what I’m talking about, here are some direct quotes, true stories dating back to 1997.

“I thought when our Dad was dying, hospice was going to come and care for him at the house 24/7, but we were mainly alone caring for him, even at the end. They gave us a phone number to call if we had questions.  We felt like the Three Stooges trying to take care of our Dad.”  True story 2012

I said to the nurse, “what do you mean you’re leaving, you said yourself she’s within an hour or two of death, aren’t you supposed to be here with us the last 72 hours of life under the Medicare hospice program?” She said, “I wish I could stay but I’m the only nurse working today and I have to go check on another hospice patient who lives alone. I’ll give you a number to call if you need help.  I’ll come back to pronounce her dead, just have me paged to come back here after she passes.”  True story 2009

“The pain package of medications hospice was supposed to deliver at the house when my father was admitted to hospice care actually arrived four days after he was admitted to hospice care and 6 hours after he died. We were left begging a doctor who had never seen my father as a patient for morphine for his pain and breathing problems as his lungs were filling with fluid.” True story 2003

“The doctor said today at our appointment that she has less than 3 weeks to live.” the husband said. I asked him, “they gave you information on hospice, right? They gave you an order for hospice care to help care for her at home, right?”  The husband said, “what’s hospice?” I explained what hospice would do for them and the husband agreed that they needed that help at the house immediately and then he said, “ok, tell me exactly how to spell  ‘hospice’ in case the oncologist doesn’t know what I’m talking about, because he’s never mentioned this service.”  True story 1997

Did you notice any difference between the 1997 quote and the 2012 quote in terms of understanding the basics of what hospice is about? Me neither.

We need to be able to talk about death and dying as a process that we all go through, but we need some basic information in order to have that conversation. That is why I am writing this blog – to give you basic information, ideas, even pointers on how to have a conversation with a person who is dying.

But let’s start with the basic information. We, as an aging nation, need to know about hospice and about pain and physical comfort management during the death process. That means discussing the hospice and palliative care programs covered by all forms of insurance. To be clear, by law, all commercial insurance programs, such as Blue Cross Blue Shield, and all HMOs, must offer a hospice benefit. Medicare and Medicaid also offer hospice coverage. All insurance coverage plans use the Medicare hospice program as their basic template for the services covered and the reimbursement rates.

Basic Overview of Hospice

If you have a loved one who wants to die at home, or is actively dying (with 6 months or less to live) in a nursing home or at a hospital, you need to know exactly what their insurance pays for and what can actually be delivered by chronically overworked and understaffed Medicare certified hospice/home health providers in your community, by the nursing home or in the hospital setting.

For purposes of this post, I’m focused on the services that support a dying person in their home through hospice.

In more rural areas, this knowledge and planning around a death at home is critically important because hospice services, medication, and equipment, like a hospital bed or CADD pump (see below for a full discussion of this device) for pain management, can take time, even many days, to be delivered into the home.

I use Medicare as the example in this post because Medicare delivers the bulk of covered hospice services in our country today.  Medicare, as you may know, is the federal health insurance program that covers every citizen over 65 year of age who is enrolled in the Medicare program, usually as a benefit of having paid into the Medicare Parts A and B programs through payroll deduction, or their dependent spouse, or anyone under age 65 but over age 18 who are eligible for Medicare due to disability.

Medicare hospice and most commercial hospice insurance coverage will pay for the three basic needs for a death to occur at home:

  1. any equipment needed in the home to support the patient’s comfort (e.g., hospital bed, chair potty, shower seat);
  2. skilled nursing visits at the home to manage medications for pain relief; and
  3. pain relief/palliative care drugs.

How do you get hospice care? 

The primary physician or treating physician needs to sign an order enrolling the patient into hospice care and send that to the hospice provider you choose. This paperwork can take a day or more to make its way through the system between the doctor’s office and the hospice provider.  To be enrolled in hospice, patients must agree that they will not seek life sustaining treatment, and will request only palliative care – care directed at making them comfortable and as pain free as possible.

What happens after a patient is admitted to hospice?

Once the physician’s order, known as a HCFA 485 form (official form of the Centers for Medicare and Medicaid Services, or CMS, the federal agency that oversees Medicare), is sent to your chosen hospice home health provider, the hospice agency will send a nurse to evaluate the patient in the home and talk with the family members who will be caring for the dying person at home. Once this assessment is done, a schedule will be set up with the family for home visits by the nurse and/or aides if necessary to help with care in the home.

Once admitted to hospice, a pain pack is supposed to be delivered into the home so that any pain the patient has can be managed quickly. Yes, I used a “wiggle” phrase in italics in that sentence.  And this is why.

Consider this fact for a moment.  A recent CNN editorial noted that over 28% of Medicare patients receiving hospice were only enrolled for the last 3 days of their lives. So, if the pain pack takes 4 days after enrollment to arrive at the house, and the patients are only enrolling for their last 3 days of life, you don’t have to be a genius to figure out that the pain pack will not arrive in time to be useful.

If you are in a rural area, you need to know where the pain pack is coming from, when it will be delivered, and what you need to do if your loved one needs pain management meds before the pain pack arrives.

Here is the other difficult issue with medications being delivered into the home: addiction.  It is important that family members with addiction issues do not gain access to the narcotics in the pain pack. I know this is a tough issue within families, but please, be honest and direct with the nurse in telling them if there is an active or recovering addict in the household.  The nurse will help you with options to secure the pain pack and syringes so that they can only be used for the patient.  This is when a CADD pump may be the right option for the patient and for the family. Read on to find out more about CADD pumps.

What kind of equipment is covered?

Equipment may also be needed in the home. For example, you may need a hospital bed delivered, or an oxygen machine. Remember, you need to ask how to use these pieces of equipment properly. When your loved one needs oxygen, and you need to turn on the oxygen machine, you won’t have time to read the directions. Write out a cheat sheet and tape it to the wall next to the bed so you don’t have to think about how to raise the bed, turn on the oxygen machine, or do whatever you may need to do.

What’s a CADD pump? CADD stands for Continuous Ambulatory Delivery Device. It is a wonderful way to manage pain in the last days or weeks of life, and it’s small, so it allows the patient to be up and walking around if they can, so you definitely want to know about this piece of equipment. It is a small computerized box that has locked inside it the medications, usually morphine and Ativan (a muscle relaxant) ordered by a physician for pain control and to stop muscle cramping.  CADD pumps are covered by the hospice program.

The CADD pump is programmed by the hospice nurse to deliver pain medication over a 24-hour period of time.  The  nurse knows how to open the pump to change out empty vials with new vials of medications when needed.  The pump delivers medications continuously through a small catheter tube that is inserted into the patient’s abdomen, so the medications are absorbed by the body quickly and there is a steady flow of pain meds to the patient.

YOU HAVE TO ASK FOR A CADD PUMP! No one is going to offer this device to you as it is quite expensive to provide. Hospice services are paid on a flat per-day rate, and that rate includes all of the equipment needed by the patient. So you have to know about CADD pumps and be ready to advocate for their use.

Caregivers in the home get tired, can hospice help with that? 

Every Medicare hospice provider is required to maintain a list of volunteers who can come into the home to help family members by providing respite care.  How would a volunteer provide respite care?   You can ask for a volunteer to come and stay with the dying person so you can leave to attend church, grocery shop, take a walk to get some air, take a nap to catch up on rest, or see your own doctor or counselor.  Volunteers are not allowed to provide direct patient care, and usually only stay a few hours at a time, but they may also spend the night sitting with the dying person to give caregivers a break so they can sleep through a night.

The bottom line about hospice care.

During the last 72 hours of life, hospice is supposed to provide skilled nursing care and supportive aide care in the home to care for the dying patient.  I live in a rural area and I’ve never seen that level of service delivered in the last 72 hours at home.

Limited hospice services, especially of skilled nurses or equipment, are more the rule than the exception for last minute enrollments in hospice, e.g., enrollments in the last few days of life, especially on a Friday. As a family member or caregiver, you have to prioritize and set goals around what you need for care and medical support for your loved one who is dying, and you need to be prepared to advocate for what your loved one needs to medical professionals.

You need to keep in mind that not much can happen on a weekend, so manage the calendar to obtain what you need during the Monday through Friday work week. Most importantly, as a circle of family or friends surrounding a dying person, each person needs to be prepared to step up to provide hands-on care to the person dying at home.

If you are called upon to care for a dying person in their home or at a health care facility, you are being honored. This is a sacred time, regardless of your spiritual beliefs, and it requires you to be fully present in your life with this other human being. Leave your own emotional baggage at the door. This person’s death is actually not about you, or the other care team members, it’s about the person who is dying. The goal is to see this dying person, body and soul, through their transition from this life into whatever lies ahead of this life, with compassion, dignity, respect, and love.  For more on this, please see my post on Death: will it bring out the best or worst in you? 

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6 comments

  1. Your detailed describtion of hospice care and all that it entails is incredibly helpful. It is clearly written — and covers all the questions I ever had about hospice plus questions I didn’t even know I had. I plan to alert all my children to your blog in general — and to this issue in particular.

    1. Thank you! So glad you are sharing this with your children as my hope in writing this blog is to get the entire care team (children, friends, neighbors) supported with practical, solid information they can use effectively to plan ahead and to use when the time comes.

  2. Beautiful. So much new and useful information.

  3. I’ll share the whole blog with administrators of the hospice program I volunteer with. I’m not a nurse or a doctor, but I can be there through as much of the time as the family knows what is available, and hospice volunteers and professionals can be there at the end.

  4. Paula, thank you so much for starting this blog. I believe it is vital for people to have sufficient knowledge to enable them to “take the bull by the horns” regarding end of life care and not wait for someone else to suggest it to them. Unfortunately, from my experience, the medical community appears to have a great reluctance to suggest hospice care until almost literally the last minute; the general “unspoken” rule seems to be it doesn’t need to be recommended until the patient is within 72 hours of death (I’m not sure why). As an example, my mother in law passed away a couple of weeks ago at the end of a long illness (she was in her 80’s). One week before her death, family members asked her doctor if hospice care might be appropriate, and the doctor seemed surprised that they would even consider it. I don’t know if this is a problem endemic to the health care establishment or not. I would appreciate your thoughts on this.

  5. Thank you!!!!!

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