END OF LIFE CARE

One conversation can make all the difference

CONSIDER THE FACTS

The Conversation

90% of people say that talking with their loved ones about end-of-life care is important.

27% have actually done so.

60% of people say that making sure their family is not burdened by tough decisions is extremely important

56% have not communicated their end-of-life wishes

80% of people say that if seriously ill, they would want to talk to their doctor about wishes for medical treatment toward the end of their life.

7% report having had this conversation with their doctor

82% of people say it’s important to put their wishes in writing.

23% have actually done it.

Source: Survey of Californians by the California HealthCare Foundation (2012, 2013)

• To not burden your family with decision making

• To spend our time together reminiscing and sharing thoughts

• To be free from treatments that won’t make us better and may make us worse

• To be comfortable, in the familiar surroundings of home and loved ones with the best care available

• To be treated with compassion and dignity and to have my wishes honored.

WHAT DO YOU WANT IN YOUR LAST MONTHS OF LIFE?

The Conversation

Your job is to let your doctor understand what matters to you most. You can discuss treatment options in the context of your current health status and your wishes.

Then you can make the decisions that are right for you.• how you are cared for• where you are cared for• make your personal wishes known to others

YOU MAKE THIS HAPPEN

The Conversation

Visiting Nurse & Hospice Care provides this presentation to assist you and your loved ones to make well informed decisions about end of life care.

An end of life care conversation:• prepares you and your loved ones for inevitable• communicates your wishes• creates a family consensus about how you want to live out your last months in comfort, peace and dignity

HAVE THE CONVERSATION

The Conversation

1. Hospice helps people with terminal illness die more quickly

2. Hospice is a place3. Hospice is a last resort when nothing else can be done4. Hospice improves quality of life at the end of life5. Hospice is a mode of therapy6. Hospice prefers a “natural” death process, meaning no

medications or treatments are allowed7. You keep your own doctor when you enter hospice

Test Your Hospice Knowledge

8. Once a person starts hospice, loved ones no longer participate in his or her care.

9. You don’t need hospice until a few days before you die10. Hospice is for cancer patients11. You need to be religious to use hospice12. Families should be shielded from dying patient13. Hospice care is expensive14. Hospice provides an interdisciplinary team to address

the clinical, spiritual and psychosocial needs of a terminally ill person and his/her family.

End of life care comforts and supports patients, caregivers and families when life-limiting illness no longer responds to cure based treatments.

It can be provided anywhere a person calls home.

It is a medical discipline that treats symptoms, not causes, of terminal illness for people in their last months.

Care is provided by a remarkable team of professionals trained to care for the terminally ill to control pain and discomfort and support the whole family to deal with the emotional, social and spiritual aspects of death and dying.

WHAT IS END OF LIFE CARE?

The Conversation

All hospice organizations are reimbursed in the same way, so they do not compete on cost. It is the quality of service and spectrum of choices that distinguish one hospice from another.

Hospice care may be paid for by:Medicare

TriCareMediCal

Private PayPrivate Insurance Charitable

Care

WHO PAYS FOR END OF LIFE CARE?

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The Conversation

Medicare 100% of hospice services are covered if the person is a Medicare beneficiary and receives end of life care from a Medicare certified hospice provider.In 2010, 83.8% of hospice patients had a Medicare hospice benefit.Medicare regulations state that people cannot be refused end of life care because of an ability to pay.Hospice payments are separate from Medicare payments for other illnesses, diseases or care the patient may be receiving.

MediCalMediCaidCenCal

Nearly all states and the District of Columbia offer 100% hospice coverage under MediCaid. In general, Medicaid hospice benefits parallel the Medicare benefit, although there may be some variations in certain states. The hospice you choose will know your states regulations.

Private Insurance

Most insurance plans issued by employers and many managed care plans offer hospice benefit. In most cases, the coverage is similar to the Medicare benefit, although there may be some variations. Review your coverage details or ask your Insurance representative.

The Conversation

TriCare TriCare is the health benefit program for military personnel and retirees. Hospice is a fully covered benefit under TriCare. Only Medicare certified hospices can provide for TriCare hospice benefits, so it is important for patients and their families to choose a qualified hospice agency.

Private Pay If insurance coverage is unavailable or insufficient, patients and their families can discuss private pay and payment plans. The hospice you choose will know your payment options.

Charitable Care Hospices have a financial specialist on staff to answer questions about financial assistance and any community resources that may be available. There is no need to defer end of life care due to financial concerns.

Ideally, the conversation begins when everyone is healthy.

The first sentence begins “What if…?”

Adult family members complete advanced care directives and discuss what their health care wishes would be if they could not communicate for themselves. Vital issues are discussed so that everyone has information to make informed decisions.

Burial, funeral or memorial service plans are discussed.

The conversation may be short but put it in writing, knowing you can change it over time.

YOUR FAMILY’S HOSPICE CONVERSATION

The Conversation

Your healthcare team:– Primary care physician– Family members– Caregivers– DPOA– Estate planning attorney

Remember: you are the expert about what matters most to you.

WHO SHOULD BE INVOLVED?

The Conversation

End of life care should be considered as soon as it appears that a medical cure options may soon be exhausted and/or the loved one or family expresses a desire to stop seeking a cure.

Your advanced care directive prepares your key family members and decision makers for this meeting to provide end of life care, comfort, and ensure that your wishes will be honored.1. Designate a health care proxy, a DPOA2. What is the best way to reach the DPOA?3. Is there a living will; what does it indicate?4. Who is the decision maker if you are unable to express your

wishes?

A PLAN OF ACTION

The Conversation

1. Who will be involved in our family’s end of life care meeting?

2. Will we include advisors from hospice, legal, medical, and/or faith organizations?

3. Have all the participants received information ahead of time regarding end of life care and your wishes?

4. When and where will the meeting take place; who will call the meeting?

THINGS TO CONSIDER

The Conversation

1. Assessing the need for end of life care

2. Understanding what end of life care can and should do

3. Spiritual and cultural considerations

4. Hospice settings

5. Physical and medical considerations

6. Practical and logistical considerations

7. The caregiver’s emotional journey

7 KEY DISCUSSION TOPICS

The Conversation

Your physician may determine if the progression of the your illness is appropriate for end of life care.

Alternatively, you or your family can call a hospice provider for a free evaluation. The provider can help you have a conversation with your physician.

1. Despite good medical care, is the patient’s condition continuing to decline?2. Has the patient endured multiple hospitalizations, emergency department

visits in the last year?3. Has the physician or specialist said there is nothing more than can be done

to slow or cure the condition?4. Do the side effects of medical treatment outweigh the benefits?

1. ASSESSING THE NEED FOR END OF LIFE CARE

The Conversation

A hospice team member will meet with the family and have a conversation about: end of life care philosophy, services, pain and symptom levels, support systems, financial and insurance resources, medications, equipment needs.

If you are hospice eligible and agree to end of life care, the hospice team then communicates with your physician to develop an individualized plan of care based on your medical history, current physical symptoms and life expectancy. The plan is reviewed regularly and revised as necessary.

You can go off care if your condition improves. There is no limit to the number of times you can elect this care.

2. WHAT END OF LIFE CARE CAN & SHOULD DO

The Conversation

Routine Home Care is available where ever you call home. Hospice care visits are determined by the plan of care and can be daily, several times a week or weekly depending your needs.Continuous Care is provided at home in continuous shifts of up to 24 hours by nurses and aides during a short period of acute care.In-patient Care is provided in a hospice unit in a designated healthcare facility for a short period when your medical needs cannot be managed at home.Respite Care is offered if caregivers need a rest or when they need to be away from home; patients are provided a brief stay in an inpatient setting.

FOUR LEVELS OF CARE

The Conversation

End of Life Care includes management of many issues: • Pain• Difficulties swallowing or breathing• Hydration, nutrition, skin care• Agitation, depression, anxiety• Recurrent infection, muscle stiffness• Communication• Care plan coordination

SCOPE OF CARE

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CARE TEAMSpecially trained in palliative care and comfort of terminally ill patients

The Conversation

Hospice Physician

Participates in the development of the plan of care, consults on comfort measures and coordinates with your personal physician

Registered Nurse

Provides visits regularly to monitor the patient’s condition, provides car and comfort, orders medications and medical equipment; reports to the hospice physician and personal physician

Social Worker Provides emotional support and helps the family access financial and community resources and end of life planning

Aide Assists with personal care and hygiene as well as light housekeeping, light laundry and occasional shopping

Chaplain Offers spiritual and emotional support and can work with the patient’s own clergy; provides compassionate support for life, death, and loss issues.

Volunteer Offers companionship and respite relief

Bereavement Specialist

Offers grief and loss support individually or in support groups

Our Chaplains support you, the caregiver, and family members and will work in cooperation with your own priest, minister, rabbi, imam or other close spiritual advisor as an end of life care liaison.

People, of all belief systems, and no belief systems, benefit from loving, nonjudgmental spiritual care. As we reach the end of our lives, we ask what meaning our life had and may question what lies beyond. It is common to want to complete any “unfinished business.”

3. SPIRITUAL AND CULTURAL CONSIDERATIONS

The Conversation

4. HOSPICE SETTINGS AT “HOME”Your hospice provider should offer clinical support 24 hours a day

The Conversation

Private Residences

In most home based situations, a family member or friend is designated the primary caregiver and provides care when hospice staff are not on site. This primary caregiver role can be filled by one or several people working as a team; they will be educated by hospice nurses to provide hands on care and to be prepared for anything unexpected.

Assisted Living CommunitiesandNursing Homes

Some communities and nursing homes have provide hospice care or they may have a partnership with a hospice provider such as VNHC. If your loved one is a nursing home resident, ask about hospice services. If you or your loved one can no longer live independently, consider an assisted living community or nursing home with excellent hospice services.

Hospice HouseHospice FacilityHospital

Typically, these are homelike facilities designed to make patients and their families feel comfortable as possible with soothing surroundings and 24/7 staffing.

Pain Control: Assessment and Management

Your hospice provider should have the skills and expertise to assess and relieve or manage pain efficiently and effectively.

A pain management plan will be created by your hospice physician who is trained in palliative care.

The caregiver and hospice nurses will administer treatment and monitor pain levels, even if you cannot verbally communicate. The goal is to keep you comfortable.

5. PHYSICAL AND MEDICAL CONSIDERATIONS

The Conversation

Medications

Pain therapy may interfere with your ability to remain lucid and interact meaningfully with others. The hospice team will discuss it with you, the family or caregiver and create a plan according to your wishes.

Pain medications may be treated with over the counter brands if effective; stronger, narcotic medications may be used in combination with other types of medications or therapy as necessary.

Every person is unique. Your hospice physician should be experienced with all aspects of pain management.

The Conversation

Nutrition

Nutrition management is vital to your comfort and quality of life.

Favorite meals are encouraged.

Your hospice team will provide information you and your caregivers will need to make difficult end of life decisions, prompted by hydration and nutrition issues, such as the inability to chew or swallow.

The team will help put your mind at ease by explaining natural processes such as a gradual decrease in thirst and hunger at the end of life.

The Conversation

• What if there is an emergency in the middle of the night?• Who should we call if I notice a change?• Is our home a safe environment?• As our loved one becomes weaker and more disabled, how will I care for him/her?• Can I keep my primary physician if I go on hospice?• If special medical supplies or equipment are needed, does hospice cover those? What about medications?•What if my loved one needs to be lifted, moved and bathed?

6. PRACTICAL & LOGISTICAL CONSIDERATIONSWhen receiving end of life care at home

The Conversation

Often, caregivers try to tend to the dying person’s every need, and become overwhelmed and exhausted. End of life care provides a variety of services to ease the caregiving experience. The hospice team will provide:• education and training; replacing guesswork with knowledge provides confidence and a sense of relief• Aides to help with bathing, grooming and light housekeeping• trained volunteers provide support and companionship or respite relief for the caregiver• emotional and spiritual support; bereavement counseling• resources for advance care directives, practical issues, legal and financial services such a paying for a burial or a memorial service, handling probate, etc.

7. THE CAREGIVER’S EMOTIONAL JOURNEY

The Conversation

Myth #1: Hospice is a place.Hospice isn’t a place. It’s the treatment of physical and emotional pain and symptoms at the end of life. End of life care is designed to respect 90% of adults who want to die at home, free of pain, surrounded by family and loved ones.

Myth #2: End of life care is “giving up”.When medical treatment cannot cure a disease, a team of hospice professionals work to improve the quality of life for you and your family, while easing discomfort, and the fears and financial burden that may accompany incurable illness.

MYTHS ABOUT END OF LIFE CARE

The Conversation

Myth # 3: End of Life Care is for Cancer PatientsEnd of life care is provided to adult and pediatric patients with terminal diseases such as heart disease, stroke, lung disease, liver disease, kidney disease, multiple sclerosis, ALS, Alzheimer’s, Parkinson’s, cancer and AIDS.

Myth #4: End of Life Care is Just Bedside Hand HoldingEnd of life care is palliative, not curative; studies show end of life care may extend life as long as one month because aggressive pain and symptom management may reduce discomfort and stress and improve quality of life.

The Conversation

Myth #5: End of Life Care is Expensive• End of life care saves healthcare dollars as it reduces multiple hospital readmissions and complex and intensive hospital care.

• The Medicare Hospice Benefit is all-inclusive, covering 100% of the cost of care, including medication and medical equipment related to the terminal diagnosis. There are no deductibles.

• In most states, MediCaid/MediCal provides hospice coverage.

• Most private insurance plans also include a hospice benefit.

The Conversation

Myth # 6, The BIGGEST MYTH OF ALL: End of Life Care is Only Needed for the Last Few Weeks of Life

• The Federal Government and Medicare know that the best end of life care takes time.

• End of life care is most beneficial to those whose life expectancy is approximately six months.

• You may receive end of life care for as long as necessary when a physician certifies that you continue to meet eligibility requirements.

The Conversation

• I have talked to my family and written down my wishes about care near the end of life.• I have shared my living will or advanced care directive with my family, my caregiver(s), and my designated power of attorney.• I have chosen who in my family will call the hospice I have chosen or will call my physician for a hospice referral.• I understand the levels of end of life care and have an idea of what resources hospice will provide.• I have considered the spiritual and emotional needs for myself and for my family.

The Conversation: A Checklist

The Conversation

• I have discussed and written down what setting I want to receive end of life care.• If I have chosen to remain at home, I have discussed with my family who will act as caregiver(s).• I have written instructions to guide hospice staff regarding my pain management wishes• I have prepared a list of practical and logistical questions for our hospice team.• I understand that if I am eligible for a Medicare hospice, I am entitled to six months of end of life care and that this may be renewed without penalty.

The Conversation: A Checklist

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Conner SR, Pyenson B, Fitch K, Spence C, Iwasaki K. (2007). Comparing hospice and non-hospice patient survival among patients who die within a three year window. J Pain Symptom Management, Mar;33(3):238-46

National Hospice Organization, commissioned Gallup Poll, 1992

NHPCO 2010 National Data Set and/or NHPCO Member Database

Provisional monthly and 12 month ending number of live births, deaths and rates; United States, January 2009. Provisional data from the National Vital Statistics System, National Center for Health Statistics, CDC, available online at: www.cdc.gov/nchs/data/dvs/provisional _tables/Provisional_Table01_2010Dec.pdf.

Stanton MW (2006). The high concentration of US Health Expenditures, Research in action, Issue 19. AHRQ Publication No. 06-0060, June 2006. Agency for Healthcare Research and Quality, Rockville MD. http://www.ahrq.gov/research/ria19/expendria.htm. Accessed August 18, 2011.

REFERENCES

The Conversation

www.VNHCSB.org www.NHPCO.orgwww.Caringinfo.orgwww.AgingWithDignity.orgwww.FamilyDoctor.orgwww.PutInWriting.org

FOR MORE INFORMATION

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