Getting Started with Hospice
If you’re thinking about hospice or palliative care for yourself or a loved one, or if your doctor has already recommended it, you’ve come to the right place. Review each of the sections below. We believe it is the fastest way to get us involved.
Many people assume their doctors will tell them when hospice and palliative care services are appropriate. But doctors are often reluctant to bring up the subject. But if you ask about the services, it becomes a different matter.
If you have received a serious diagnosis, ask your doctor for accurate information about your prognosis. We suggest that asking the question “If you had my diagnosis and prognosis, what would you do?” because it may put your doctor at ease, since he or she isn’t put in the position of telling you how to live your life.
Make well-informed decisions means asking the right questions. And that means preparation.
Before the Appointment
When you have a serious illness, many questions are likely to arise, and you have a right to the answers. During a doctor’s appointment, however, it’s easy to get side tracked. Anxiety often runs high and can block your clearest thinking. As well, doctors have schedules to keep. If you feel pressured during the appointment, it may be difficult to stay focused on addressing each of your concerns. We suggest you maximize your time with the doctor by preparing for your appointments beforehand. Here are some tips:
- Write down your questions and then prioritize them (for instance, put a 1 by the most important, a 2 by the next most important, etc.).
- If you see that you have many questions, you may want to call the doctor’s office and see if you can book a double appointment to be sure they all get answered.
- Bring all your medications with you to the appointment. This way, if the doctor prescribes something new or if you are experiencing distressing symptoms, he or she can review your medications to be sure there is no problem with drug interactions.
- When you arrive for the appointment, give the medical assistant a copy of your written questions and ask that they be put on the front of the chart so the doctor can see them.
- Have someone come with you into the exam room. This person should also have a copy of the questions. He or she can take notes during the appointment and help make sure your questions have been addressed to your satisfaction.
- Start by asking the doctor the most important question first, then the next most important, and on down the list.
- Stay focused.
- If you hear words you do not understand, ask for an explanation.
- If the doctor does not have enough time, ask if someone else on his or her staff can answer your questions. If that is not an option, then ask if you can make another appointment so you can finish. Remember, you have a right to have your questions answered.
- Spend time after the visit talking with the person who came with you. He or she will likely have good insights, and can help you identify any areas that are still unclear.
Specific Questions You Should Ask
- How serious is this illness? If I do nothing, what is likely to happen?
- On the basis of my current condition, what do you expect in the next few weeks? The next few months?
- Do you think I would benefit more by focusing on comfort care (e.g., removal of pain) rather than treatment? What is provided with comfort care? Am I eligible for hospice care?
- Are you willing to refer me to hospice?
Get a Second Opinion
You may wish to get a second opinion from another doctor. Awkward as it might feel, it is a good idea to let your doctor know about your plans because the second doctor will request copies of your chart, and any lab reports.
Doctors understand that second opinions, especially in the context of serious illnesses, are a good idea. Sometimes they are required by insurance, and sometimes it’s simply something the patient needs to do to feel all options have been explored. If your doctor disapproves of your desire for a second opinion, remember that it is your health and therefore your decision to make.
Some areas have many hospice programs, while other geographical areas may only have a few hospices. While there are large and small, rural, urban and suburban hospices, but all Medicare-certified hospices must provide the same core services.
First and foremost, a hospice should be:
- Respectful of the lifestyles of all it serves.
- Serve people regardless of race, religion, economic or social status.
- An agent for learning in the community, especially the medical community.
- An agent for change, especially in the health care community.
- Humble about the work it is privileged to do.
Here at Shangrila Hospice, we think one of the first questions to ask is “What is the reputation of the hospice?” Persons to ask would include your doctor, your minister and especially families that have received hospice care in your community. We would also like to make these further suggestions.
Here are some questions to ask us, and any other hospice provider you may be considering:
- The patient’s address is ____________. Does the hospice serve this area?
- How long has the hospice been in operation?
- Is the hospice certified by Medicare?
- Does the hospice accept Medicaid?
- What other insurance is accepted?
- Is the hospice licensed by the State?
- What services does the hospice provide?
- What, if any, hospice services does the hospice not provide?
- Is participation in care by a family caregiver required for hospice enrollment?
- What is expected from the family caregiver?
- How can hospice supplement the family's responsibilities?
- To what degree are volunteer services available in the home?
- What, if any, out-of-pocket charges can we anticipate? For what services?
- How often does hospice staff make home visits?
- Who provides on-call coverage during nights and weekends?
- Does the hospice have contracts with local long-term-care facilities? If so, which one(s)?
- Does the hospice have an inpatient facility?
- Does the hospice provide funeral arrangement support?
- What bereavement services are provided? For how long? In what settings?
A Suggestion from Shangrila Hospice
If you are uncertain about whether our hospice is right for you, ask us to perform an evaluation of the patient and let you know if we would be an appropriate referral.
Hospice care is paid for in a variety of ways. Medicare, Medicaid, and most private insurers cover hospice-related services at 100%, typically without any deductibles or co-pays.
If a patient comes to Shangrila Hospice in need of hospice or palliative care but does not have coverage, we will help that patient obtain coverage. The types of insurance plans that cover hospice are listed below.
Medicare Part A covers most hospice services for eligible beneficiaries. (The hospice provider must be Medicare-certified.) For detailed information, download a brochure from the Centers for Medicare and Medicaid Services about hospice coverage.
In most states, hospice care is covered by Medicaid, if the hospice provider is Medicare-certified. Benefits may vary by state.
Most insurance plans issued by employers and the military, as well as many managed care plans, cover hospice. Benefits may vary by plan.
What You Should Know About the Cost of Shangrila Hospice
- Shangrila Hospice is Medicare-certified.
This means that Evercare hospice and palliative services are covered by Medicare, Medicaid, military health plans and most private insurance companies.
- Shangrila Hospice provides hospice services, regardless of ability to pay.
We are dedicated to helping patients obtain coverage for hospice or palliative care when needed.
- Shangrila Hospice does not charge co-pays for prescription drugs or inpatient respite care services related to hospice or palliative care.
- Shangrila Hospice does the paperwork for you.
- We make it simple. We bills insurers directly, eliminating the need for patients to file claims or other paperwork for care related to the terminal illness.
Step 1. Talk to your doctor.
It’s never too early to talk to the doctor about hospice or palliative care. The doctor can help determine if care is appropriate, and, if so, write an order. A doctor’s order is required in order for a patient to receive hospice or palliative care. Our checklist of signs and symptoms will help you make the decision to speak with your doctor about hospice:
- The doctor has informed the patient that he or she has a life-limiting illness, and the patient's general health continues to decline, in spite of the curative treatments he or she is receiving.
- The patient is in-and-out of the hospital frequently.
- Repeat or multiple infections are occurring, causing additional challenges to the patient's health.
- Increased or uncontrolled pain is impacting quality of life.
- Weakness, fatigue or shortness of breath is dramatically limiting a patient's mobility.
- The patient is unable to live independently or manage daily tasks on his or her own.
- The patient's changing mental awareness requires close observation and support.
Step 2. Have the “hospice conversation” with the patient.
We often feel uncomfortable, even when a family member is dying, to begin a conversation about hospice. Yet, that conversation is critical for a number of reasons:
- Hospice can offer vital services not only for the person who is dying but also for the entire family.
- Hospice may allow the possibility for the person to remain where they are – perhaps at home, in an assisted-living facility, or even a nursing home – sparing them a move to an unfamiliar hospital.
- Even at the end-of-life, anyone capable of making decisions retains the right to make decisions about his or her care. This allows the individual the dignity to decide – a right that is even more important as other aspects of life that the person can control become more limited.
It is important to remember that choosing hospice is not “giving up”. Hospice is often described as “aggressive comfort care, which means the team works very hard to keep the person as comfortable as possible, so that the person may live his or her remaining life in the fullest possible way.
Some additional suggestions include:
Ask yourself who might best person to engage in this conversation with the patient. Is there a family member or friend that seems best? Would someone such as clergy or the physician be the most appropriate person?
Choose the time carefully as well. Find a quiet time when the patient is comfortable and there are no distractions to discuss the question of hospice. Respect the fact that the patient may not be ready to address the issue at that time. Allow the patient their right to talk about this issue in the future. After all, big decisions are not often made right away.
Phrase the question gently, and considerately. Ask them if they’d like to consider the choice. Once hospice does an evaluation, the hospice staff can help assess whether hospice would be helpful and address any concerns that the patient or other family members may have. Even at that point, there may be a decision on whether or not to engage hospice care.
We’d like to remind you that a referral to hospice is appropriate when:
- A patient has a terminal illness with a life expectancy of 6 months or less.
- Comfort care and symptom management become the primary focus.
- Curative treatment is no longer the patient’s choice or option.
Step 3. Call us.
We recommend that the patient’s doctor or other health care professional (such as a nurse or social worker) contact us to refer a patient to hospice. However, if you feel this is an emergency and you can’t reach the doctor, please do not hesitate to call us. We’re here to help, 24 hours a day, 7 days a week. We can walk you through the process and make all the necessary arrangements, free of charge.
What Happens When You Call Us
- A trained Shangrila Hospice representative will ask you a few questions about your loved one’s condition.
- If you need help contacting the doctor (a doctor’s order required for hospice or palliative care), we will help you.
- We will set up an appointment with the doctor to meet with you and to have your loved one evaluated for care.
- If hospice or palliative care is considered appropriate, we will complete the necessary medical and legal paperwork to begin care immediately.
Shangrila Hospice Admits All Hospice-Eligible Referrals the Same Day
We respond to all patient-related calls within 15 minutes—24 hours a day, 7 days a week. Unless requested otherwise, patients can begin receiving hospice or palliative care the same day you contact us.