End of Life Care Planning

We plan for the best life possible. Yet, all too often in this planning, we put off thinking about our final chapter of life and how to close that chapter as peacefully as possible and without crisis.

Consider this: Research shows that 70 percent of Americans would prefer to be at home with loved ones in their final days, yet only about 25 percent die at home. And, one of the most requested advice from legal aid is how to deal with end-of-life issues amidst a family crisis.

By planning for end-of-life care, many people may be able to avoid dying in unfamiliar institutional settings and can help their families avoid being impoverished by end-of-life care.

To help tackle planning for end-of-life care, please see the following checklists and resources. This material is informational only and not intended as legal advice. If you have questions, please consult with your doctor or a lawyer.

• End-of-Life Care Checklist
• Advance Health Care Directives
• Hospice Care
• Palliative Care/Pain Management

End-of-Life Care Checklist

• Gather Information For Decision-Making. Talk with your doctor, family, close friends and other trustworthy advisors about your health care wishes, questions and concerns.
• Prepare Your Advance Health Care Directive. After learning about your options and discussing your wishes, prepare an advance health care directive. Consider addressing palliative care/pain management and hospice care in your advance care directive.
• Prepare An Estate/Financial Plan. By developing an estate/financial plan, you can avoid surprises and help protect the long-term health of your assets. While difficult to predict future needs, it would be useful to learn what kind of financial assistance you may be able to receive under your health insurance plan, disability insurance plan and Medicare. Address in advance your wishes for the often-taboo subject of funeral arrangements. Information is available from the California Department of Consumer Affairs. Keep a personal copy of your estate/financial plan in a safe and accessible place, and give copies to your lawyer and other trusted people, so that others can refer to it when it is needed.
• Keep Information Safe And Accessible. Your best plans will not be any good unless both you and others can refer to them when they are needed. Keep a personal copy of your advance health care in a safe accessible place, and give copies to your doctor, lawyer and other trusted people. Keep your estate/financial plan in a safe and accessible place, and let your lawyer, executor or beneficiaries know where it is.

Advance Health Care Directives

An advance health care directive lets your doctor, family and friends know your health care preferences, including the types of special treatment you want or don't want at the end of life and your desire for diagnostic testing, surgical procedures, cardiopulmonary resuscitation and organ donation.

By considering your options early, you can ensure the quality of life that is important to you and avoid having your family guess your wishes or make critical medical care decisions for you under stress or in emotional turmoil.

Advance Health Care Directives Checklist

• Gather Information For Decision Making. Ask your doctor about your end-of-life health care treatment options. In addition, many organizations have information that may be useful. For more information, see Resources on Advance Care Planning.
• Discuss Your End-of-Life Decisions With Key People. Talk about your decisions with your family, doctor and others who are close to you. Some questions to consider for discussion:
  • What health situations do you anticipate may occur?
  • What abilities are so critical to your life that you can’t imagine living without them?
  • Which is more important to you, the possibility of a longer life and the possibility of a better quality of life, and how much medical treatment you are willing to go through?
  • Are there specific medical treatments you want or do not want?
  • When you are dying, do you want to be in a nursing home, hospital or at home?
  • What do you want for palliative care/pain management and hospice care?
  • What other things do you want to make sure happens or does not happen, and what else do you want to make sure you loved ones and health care team know about your end-of-life health care preferences?
• Designate Someone To Carry Out Your Wishes. Decide who should handle your health care choices if you are unable to do so, and discuss the matter with them. You can name a spouse, relative or other trusted person. Make sure they understand your health care preferences. Identify that person in your advance health care directive. You can also identify alternate designated people to handle your health care choices if your designated person is unable to do so.
• Prepare Your Advance Care Directive. Under state law, you have a legal right to express your health care wishes and to have them considered in situations when you are unable to make these decisions yourself. While state law requires certain provisions to appear in your health care directive, there is no required form to document your wishes. Probate Code section 4701. Many resources are available on how to prepare advance health care directives, including sample forms and FAQs provided by health and hospice care providers. For more information, see Resources on Advance Care Planning.
• Inform Key People Of Your Preferences. Notify your doctor, family and close friends about your end-of-life preferences. Keep a copy of your signed and completed advance health care directive safe and accessible. This will help ensure that your wishes will be known at the critical time and carried out. Give a copy of your form to:
  • The person you appoint as your designated agent to carry out your wishes, and to any alternate designated agents
  • Your doctor and other health care providers
  • The health care institution that is providing your care
  • Trusted family members and other trusted, responsible people who are likely to be called if there is a medical emergency

Resources on Advance Care Planning

There are many resources on advance care planning. This list is intended as a starting point for your research and is not an endorsement of any organization or its materials.

• The Agent’s Role In End-of-Life Care – Robert Wood Johnson Foundation Report
• Communicating Your End-of-Life Wishes
• Advance Directives – UCSF Health
• Advance Care Planning – UC Davis Health
• PREPARE Advance Directive
• American Association of Retired Persons (AARP) is a membership organization addressing health care, consumer protection and other issues for older Americans.
• California Coalition for Compassionate Care is a statewide collaborative of more than 50 organizations representing healthcare providers, consumers and state agencies committed to improving end-of-life care for Californians.

Hospice Care

Hospice care is designed to comfort and support patients and their families when the patient can no longer benefit from cure-oriented medical treatment. The typical hospice patient has a life expectancy of six months or less. Hospice care typically allows a dying patient to receive care at home surrounded by family and friends.

Hospice services are provided by a team of trained professionals – doctors, nurses, counselors, therapists, social workers, aides and volunteers – who provide medical care and support services not only to the patient, but to the patient's family and loved ones. The care addresses the emotional, social and spiritual impact of the disease on the patient and the patient's family.

Note that hospice physicians are not a substitute for your own personal physician. Hospice physicians primarily prescribe medication for pain management and may have little expertise in other chronic health conditions you may have. They focus on symptoms rather than causes, managing pain after it occurs rather than providing preventive care or treatment. Other medical conditions should continue to be treated by your primary care physician or relevant specialist to maximize your comfort and quality of remaining life (e.g. heart conditions, thyroid conditions, memory issues, diabetes, and cancer if not related to the hospice diagnosis)

There are many hospice programs, which vary in quality. You should ask a knowledgeable person you trust, such as your personal physician, for recommendations and evaluate several options before selecting one.

You should carefully review any hospice plan of care before signing it. There are a wide variety of services that may be available, including physical therapy, but that may not be provided if they are not listed in the plan of care. Hospice programs receive per diem compensation and therefore have a financial incentive to limit services to those specifically negotiated for in the plan of care. You should ask for a complete list of available services, and be sure to request that your plan of care include all services that you and your personal physician feel will be beneficial for you.

As the primary health insurer for people age 65 and older, Medicare offers certain hospice benefits for end-of-life care. Check with the federal Social Security Administration and your health insurance plan for more information.

Resources On Hospice Care

There are many resources on hospice care. This list is intended as a starting point for your research and is not an endorsement of any organization or its materials.

• Medicare Hospice Benefits
• Medicare Coverage of Skilled Nursing Facility Care
• Medicare
• California Hospice & Palliative Care Association
• Hospice Foundation of America
• National Hospice and Palliative Care Organization

Palliative Care/Pain Management

Modern health care focuses on end-of-life pain through palliative care and pain management.

In California, all hospitals and nursing homes are required to assess a patient's pain condition as a fifth vital sign, along with the patient's pulse, temperature, respiration and blood pressure. California also requires all medical schools in the state to train physicians on pain management and end-of-life care.

Palliative care is given to patients who face serious illness for which there is not a cure. Often called "hospice-type care," palliative care seeks to make the patient's life as comfortable as possible by controlling pain and symptoms, by easing the patient's concerns over daily living needs, and by helping the patient and family address psychological and spiritual needs. Respect for the patient's culture, beliefs and values are essential components of palliative care.

Ensuring Good Pain Management

• Since different illnesses will require different approaches, ask your doctor how he/she will manage pain that can result from your illness. Your doctor should make sure that you have access to appropriate pain specialists.
• Consider how much pain you may be able to endure in exchange for other quality-of-life factors, such as alertness and physical ability.
• Easing your pain is a priority, so let your caregivers know when you are experiencing pain.
• Be as specific and thorough as possible in describing your pain. Alert your doctor when you are unable to do specific things and when the pain is better or worse. Consider indicating your pain using a scale of 1 to 10.
• Once you create a personal pain management plan, be sure to use it to avoid physical discomfort.