My Grandfather was German, stood about six feet tall and swam every day for decades. He took pride in his discipline. As a young boy I looked at him with awe.
Like many thoughtful loving people in this world he got a sign that his time would come to an end. It was the late 90’s and his doctor told him he had cancer. ‘Leukemia’, he said. We were all devastated.
A slew of advisors and aids jumped on his case. Each took up a roll, from his general practitioner to his specialist, from the doctor at Northwestern to the priest from his local church. His old buddies from the war wrote gathered together and wrote him letters of encouragement.
But when it came to one final type of aid, hospice, he was unable to take the assistance.
Why? To be honest, I don’t know. I can only imagine that it would be absolutely heartbreaking to admit that you’re going to die. To admit to yourself that you can no longer kiss your wife or snuggle under covers on a cool winter morning, to know that soon you will no longer see the golden sunrise through pine trees or wrap your arms around a grandchild jumping with excitement to see you.
I have spoken with many people about their caregiving process of a loved one who is slipping away. For nearly every single person, hospice was a godsend.
I highly encourage you to consider it. In those final moments Hospice workers will give you the chance to sleep for 20 minutes after you’ve been up for three days. They will help you to say what you need to say before the end. They will give your loved one medication to ease the pain and tell them the crucial words, ‘You matter’.
To give you some background in making your decision about hospice, we will be addressing three questions in this post:
- What is hospice?
- What services does hospice provide?
- How do you sign up for hospice?
I. What is Hospice?
Hospice provides nursing, medical care and emotional support to dying patients and their families. Hospice groups can be found throughout the U.S. (find one near you here).
Hospice care is generally provided in the home of the dying patient (though sometimes it’s offered in a nursing home or hospital), and it focuses on making the person comfortable during their final weeks or months. Hospice becomes the hub for all medical activity, working directly with the patient’s doctor and hospital to coordinate care. Hospice staff can also prescribe and administer medication.
Hospice acknowledges that providing care can be stressful and exhausting, so another focus is on the family and main caregiver. Social workers, nursing aides, volunteers, and religious leaders sit down with the family and discuss emotional challenges, help with items around the house and lend a hand wherever it is needed.
Anyone who is seriously ill and nearing the end of life is eligible for hospice. There are, however, a few criteria that someone seeking hospice services must meet:
- Be within six months of passing
- Have a primary caregiver in the home
- Be willing to no longer receive curative treatment
- Have a do-not-resuscitate order (for most but not all hospice groups)
Hospice groups take their current workloads into account when considering taking on new patients. Generally, a group that’s less overwhelmed will be more relaxed on the above requirements.
If you run into a couple Hospice groups that do not have capacity to take on your loved one keep looking. It is highly likely that you will find one in your area that has availability (particularly if you live in an Urban area with multiple organizations).
Palliative Care v. Hospice
Think of palliative care as a medical method and hospice as a medical organization. Like hospice, palliative care focuses on patients who won’t respond to curative treatment and who are generally within six months of death. The theme of palliative care is comfort and dignity in dying. Once a patient (or the family) chooses palliative care as the primary form of medical treatment, a team of doctors, social workers and others put together a plan for care. They prescribe pain mediation, may move the patient home and can arrange for support and caregiving.
Hospice is a group of institutions that practice palliative care. Some palliative care sections of hospitals are run by hospice groups.
Can you have a palliative care team at a hospital and also access hospice services? Yes. You should explore both, because not only is hospice free, but it might offer more services than your loved one will receive at the hospital. Hospice groups may be more able to:
- Send nurses to your home
- Provide support and respite care for family caregivers
- Cover the cost of transfer from a nursing home
- Supply volunteers to help with chores at home
Common Concerns About Hospice
- “Hospice probably isn’t available to my loved one.” – Hospice is available to anyone within six months of death
- “It’s not that bad yet.” – Sign up with hospice in advance so that Hospice will have enough time to line up someone for your family.
- “It may be too late!” – Initiating care can take as little as one to two days if the situation is serious.
- “We already have palliative care.” – Hospice can offer additional services.
- “Hospice is just for the patient.” – One of the goals of hospice is to provide care for the caregiver and family.
- “I’m not sure if it’s the best fit.” – Hospice care can always be stopped.
II. What Services Does Hospice Provide?
Services offered vary depending on the local hospice group you’re dealing with, and our loved one’s needs will likely change with time. It’s important to understand exactly what type of care is available to you.
There are more than 8,000 hospice organizations in the U.S. While they all have a common base level of service (end-of-life care), offerings beyond that vary greatly from group to group. Some provide services at home or in a hospital setting, but many only provide services at home.
It can be difficult for patients and their families to decide if the home or hospital setting will best suit their needs. Use the below table as a checklist as you talk to different hospice groups.
Illnesses common among Hospice patients
…and many more
How Does Hospice Get Paid?
Generally, hospice gets paid in three ways: through Medicare or Medicaid, through private insurance, and through private donations. Many hospice organizations will first turn to Medicare or Medicaid or to your private health insurance policy. For any costs beyond that, hospice turns to private donations. Most importantly, hospice does not require the ill individual or their family to pay any money out of pocket.
Hospice works directly with Medicare or Medicaid and private insurers to collect funds for services. Once your family provides the initial set of information, you won’t be involved in the billing process.
III. How Do You Sign Up For Hospice?
Signing up for hospice services usually takes about two weeks. With that said, in a crisis situation hospice can often be in your home and providing nursing services in a matter of one to two days. (Around major holiday weekends, emergency staffing may not be available).
If at all possible, prepare the paperwork (discussed below) and bring hospice into your loved one’s home before the services are desperately needed. This can be a challenge, but building in a few extra weeks means you’ll be able to take advantage of the full set of services from hospice.
Here are some general guidelines on timing:
- Day 1 – 3: Talking to your loved one
- Day 3 – 8: Researching local hospice groups
- Day 9 – 11: Enrolling in Hospice
- Day 12: Hospice intake interview
- Day 13 – Ongoing: Receiving hospice visits
Days 1-3: Talking to your loved one
Explain the basics of the services that will be provided. The National Hospice and Palliative Care Organization and Hospice Foundation of America are good resources for additional information
This is a difficult conversation. Your ill loved one will need to understand and begin to accept that death is near. It’s necessary to get to this point for hospice services to commence. Without this acknowledgement from the ill individual Hospice will not come into the home.
The reason for this is because their medical focus is on providing comfort based and not rehabilitative care. Emotionally they want the ill individual to be in the same place.
Day 3-8: Researching local hospice groups
Step 1: Locate a hospice organization
Check here to find hospice services in your area. Identify three to four hospice groups you’d like to learn more about. Puruse their websites and review the basic set of services offered.
Step 2: Set up an informational call
Once you’ve identified a few local hospice organizations, set aside time to call them. Most are open Monday to Friday from 8:00 am to 5:00 pm (24-hour phone support is usually exclusively for current clients).
Ask to speak to a nurse or case manager about the general services provided by the organization. Explain briefly that you have an ill family member and would like to learn a bit more about their program. Allow 20 to 45 minutes for each call.
Step 3: Ask targeted questions
Review “Overview of hospice services” (link to higher in the post) prior to calling, and write out any additional questions you have regarding your particular situation. At bare minimum, you should expect each service listed in the “All hospice organizations” column to be offered. AARP offers a helpful list of questions you might consider asking as you make these calls:
- What services do you provide?
- How soon can services begin?
- What kind of support can the family, and especially the caregiver, expect?
- What will a hospice volunteer do for the patient?
- What role will the general physician play?
- How will hospice keep the patient comfortable and free of pain?
- Does the program provide services 24 hours a day, seven days a week?
- Does it offer inpatient services at a hospital or other facility? If so, where?
- Does it offer services in nursing homes and long-term care facilities?
- Does it offer services in a hospital?
- Is this hospice program Medicare certified and state licensed?
- How will the hospice staff follow the patient’s wishes? What happens if they don’t?
Step 4: Follow up
As you talk to different hospice organizations, you’ll learn more about what’s important to you and your family. Circle back to the organizations whose end-of-life care approach and services resonate with you.
Once you feel comfortable with a specific organization and confident in their ability to provide the services you value, it’s time to move forward.
Day 9-11: Enrolling in hospice
For your loved one to receive hospice care, you must get authorization from the primary care doctor that death is less than six months away. Either ask the doctor to contact the hospice, or ask the hospice to contact the doctor. It’s possible to get authorization in as little as a day, but it could take longer if the doctor is busy caring for other patients.
Day 12: Hospice intake interview
After receiving authorization from the physician, the hospice will send a nurse or a social worker to his or her home to interview your loved one for intake and to offer additional information to you and your family. This is a good opportunity for you to ask questions, asses whether the organization is a good fit and learn more about the logistics of the program. Your loved one’s primary caregiver, who will be interacting with the hospice providers regularly, must be present at this meeting. Family members and friends are also welcome to participate.
During the intake interview, the nurse or social worker will ask for your loved one’s basic personal information: name, address, date of birth, Social Security number and insurance information, as well as approximate height and weight. Collect this information in advance.
Then they’ll share background information about the hospice program. They’ll talk about nurses visiting the home, partnership with the primary care physician and assistance with obtaining medical devices, among many other things.
They’ll also ask you and your family questions, such as:
- What does comfort mean to you? What are your near-term goals?
- Who is providing caregiving? How often?
- Do you have a DNR (do-not-resuscitate) order in place?
- Are you comfortable with pain medication?
- Does your loved one have any conditions that require a specific type of care?
Assessment of services needed
Hospice also uses this first visit to assess what services will be needed and how often. For example, should nurses come by twice a week or every day? Does the family need help around the house? What type of medical equipment should be brought into the home?
They’ll answer these questions by talking to the family and caregivers to get a sense for the current level of care, and by conducting a physical examination of the patient. They’re assessing things like vital signs, bowel and bladder status, and skin condition (for example, bed sores).
What should you advocate for?
- Get as many nursing visits a week as you can – Visits from medical professionals provide the ill with comfort and confidence. Lobby hard for daily visits.
- Watch pain medication dosage – Be involved and present when pain medication is administered. It only takes one bad mistake.
- Get support for the family – Caregivers face stress, sleep deprivation and financial difficulty. Support and some breaks are necessary to be an effective caregiver.
- Secure the best possible care for a few months down the road – Understand your loved one’s support options in the hospital or nursing home setting.
The hospice nurse will bring all of this information to the staff doctor, who will decide whether to admit your loved one and work with the nurse to set up a care plan.
Day 13 – Ongoing: Receiving hospice visits
Hospice will set up a weekly schedule with you and your family. This will include visits from nurses, doctors and aides. They’ll share a phone number where a nurse can be reached 24/7. Remember, you can adjust or even halt hospice services any time you wish.
Hospice provides you and your loved ones with support and care during a difficult time. It may not seem like you need it today, but it’s important to get the ball rolling and explore hospice services before they’re needed.
In our country, many programs for the elderly are insufficient, low-quality or non-existent. Hospice is one program I‘ve heard positive things about from the vast majority of people I’ve talked to.
Hospice workers are experienced with the process of dying and know how to guide a family through it. They can provide care, comfort, and relief to the patient as well to family members.
If you need to contact a local Hospice organization click here to find one in your area.
December 11, 2014
By: JP Adams