Quality information is essential if individuals and their loved ones are to be prepared for the choices that come with serious illness and end-of-life. Not knowing about hospice and palliative care means not being able to choose a comprehensive approach to you or your loved ones care at one of the most challenging and vulnerable times of our lives.

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HOSPICE CARE

The majority of Americans (80%) say they would prefer to be cared for and die at home and yet only 36% of us receive hospice care. CHAPCA believes the best time to learn about hospice, and ask about hospice, is before hospice services are needed. To fully benefit from hospice services, patients and families must be referred with a six month prognosis to benefit from hospice services.

HISTORY OF HOSPICE

The word “hospice” derives from the Latin word hospes, which means both “guest” and “host.” Since the 11th century, the concept of hospice was adopted by the Roman Catholic tradition to refer to a place of hospitality for the sick and dying as well as for travelers and pilgrims. The first of such hospices are believed to have been established during the Crusades. Hospices were widespread in the Middle Ages but diminished as religious orders became dispersed.

The modern usage of hospice as a place for and philosophy of end-of-life care began with the work of a British physician named Dame Cicely Saunders. Dr. Saunders began work with terminally ill patients in the London area in 1948 as a nurse and earned her medical degree in 1957. In 1963, during a talk at Yale University in the US, Dr. Saunders introduced the idea of specialized care for the dying, which centered on palliative care rather than treatments to cure. In the audience were doctors, nurses, chaplains, and medical students. During this talk, Dr. Saunders showed pictures of patients who were terminally ill with cancer prior to and after receiving specialized hospice care. The difference in the patients’ appearance and overall wellbeing was remarkable, and this began the discussion in the US of providing hospice care to patients at the end of life.

In 1967, Dr. Saunders founded St. Christopher’s Hospice in London, the first hospice for terminally ill patients in the United Kingdom. Dr. Florence Wald, Dean of the Yale School of Nursing, took a sabbatical in 1968 to work at St. Christopher’s to experience hospice first hand.

In 1969, Dr. Elisabeth Kubler-Ross published her groundbreaking book, On Death and Dying, which contains more than 500 interviews with dying patients. In this book, Dr. Kubler-Ross emphasizes the benefits of home care over treatment in an institutional setting for terminally ill patients, and argues that everyone deserves the right to decide about their end-of-life care. In 1972, Kubler-Ross testified before the US Senate Special Committee on Aging about the right to die with dignity, a big part of which is the right to make decisions about one’s end-of-life care and to die at home.

In 1974, Florence Wald, two pediatricians, and a chaplain founded the first hospice in the US—Connecticut Hospice in Branford, CT. That same year, Senators Frank Church and Frank E. Moss introduced legislation to provide federal funds for hospice programs. The legislation didn’t pass. It wasn’t until 1982 that Congress included a provision to create a Medicare hospice benefit as part of the Tax Equity and Fiscal Responsibility Act of 1982, but it contained a sundown provision for 1986.

In 1986, the Medicare Hospice Benefit was enacted, and states were given the option to include hospice in their Medicaid programs. Hospice care was made available to terminally ill nursing home residents as well.

For the next three decades, legislation was passed, funding was improved, and Medicare reimbursement rates were increased, resulting in the proliferation of hospice care providers. In In 2004, the number of Americans who received hospice services topped one million for the first time and, in 2005, the number of hospice providers in the US exceeded 4000.

“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”

Dame Cicely Saunders, nurse, physician and writer, and founder of hospice movement (1918 – 2005)

WHAT IS HOSPICE?

Hospice is available to people living with an end-stage disease including cancer, pulmonary disease, ALS, heart disease, HIV-AIDS, dementia, Alzheimer’s, and any other life-threatening illness. Hospice care is available to patients who no longer wish treatment directed at curing their disease. The hospice benefit is flexible. Initially, a physician certifies that the patient has a life expectancy of six months or less, if the disease follows its normal course. The first two certifications are for 90 days each. Thereafter, the physician re-certifies eligibility every 60 days. As long as the patient is re-certified, he/she remains eligible for hospice, even when it exceeds six months. Programs are available for adults, children and infants. When cure is no longer a real possibility, hospice focuses on and treats the person, not the disease. A primary goal is to control pain and other symptoms so the patient can remain as alert and comfortable as possible. Hospice includes all of the services needed to manage an individual’s medical care and also provides emotional and spiritual support for the whole family. Hospice stresses quality of life and is an alternative to extended medical or curative treatments. Many people actually live longer under hospice because their symptoms are managed and treated based on their unique needs and preferences.

HOW DOES HOSPICE WORK?

Individuals are usually referred to hospice by their personal physician, although individuals can be referred by their families or even by themselves. Hospice usually begins within 48 hours after a referral, and can begin sooner based on the circumstances. The hospice nurse evaluates what the person and family needs and develops a plan of care. The plan addresses the entire family’s needs: medical, emotional, psychological, spiritual and support services. The nurse then coordinates the care with a physician and the full team of health professionals. Under the direction of a physician, hospice provides an all-inclusive set of services needed to manage all of a person’s symptoms and complications. Medical care is given, symptom relief is provided, and the patient and family receive the support and understanding they need.

WHAT SERVICES ARE INCLUDED?

Services are provided by a coordinated team that draws upon many different kinds of professionals who provide medical care and support services. The team also ensures that services and resources are available and provided when needed, without the family having to locate and arrange for them. When staying at home, family and friends are encouraged to participate in the patient’s care as much as possible. When someone doesn’t have family who can serve as caregivers the team may be able to help identify friends and people in the community who volunteer to help. The hospice team remains available for help and support to the patient and family.

Your hospice interdisciplinary team includes:

  • Chaplain
  • Hospice Aide
  • Physician**
  • Hospice Aides
  • Social Services
  • Nursing
  • Trained Volunteers

    **Your personal physician is also a welcome part of the hospice team and may continue to bill for professional services.

Additional Hospice Benefits
• Bereavement counseling and support is provided to the family for up to 13 months or longer, if needed, after the death of their loved one.
• All medications related to the terminal diagnosis.
• Medical supplies and appliances related to the terminal illness.
• Patient and family education (i.e. the team teaches the family caregivers how to provide care).
• Short-term inpatient care, including respite care.
• Other services as required, including: physical, occupational, dietary and speech-language therapy.

WHAT IS NOT COVERED?

Hospice insurers, including Medicare, don’t pay for round-the-clock home nursing. In addition, experimental treatments, clinical trials or other medical services aimed at curing the disease are not covered. Many people think so but funeral services are also not covered by hospice.

HOW DO I ASK FOR HOSPICE?

You don’t have to wait until your physician brings up hospice. You can take the initiative, you can begin the discussion with your personal physician, or you can request an evaluation directly from a hospice program at any time. Hospice care begins with a referral, usually from your physician, but referrals can be made by you, family members or even friends. If you are not sure you are ready or if you think you want hospice but need more specific information to help you decide, you can ask for a hospice consultation.

ARE THERE DIFFERENT TYPES OF HOSPICE PROGRAMS?

Hospice programs differ in size, scope of care and organization. Programs may range from volunteer hospices that rely heavily on professional and lay volunteers to organizations that provide comprehensive palliative and support services through professional employees, with support from lay volunteers.

WHO PAYS FOR HOSPICE CARE?

Hospice is covered by Medicare, Medi-Cal and most commercial insurance. It pays for a wide range of support services that are aimed at keeping the patient as comfortable as possible. While each hospice has its own policies concerning payment for care, it is a principle of hospice to offer services based upon need rather than the ability to pay. While hospice care is a covered benefit under many insurance plans, many hospices also rely heavily, if not entirely, upon community support for donations to provide care to those who cannot otherwise afford it.

CAN I CHANGE MY MIND?

Yes, a person may elect to end their hospice care at any time and then may receive hospice care again, if desired, at a later date. For example, an individual can leave hospice to try a new curative treatment and return to hospice, if they still meet program criteria of a six month life expectancy.

At the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so.


PALLIATIVE CARE

Approximately 90 million Americans are living with serious illness, and this number is expected to more than double over the next 25 years with the aging of the baby boomers. Approximately 6,000,000 people in the United States could benefit from palliative care. CHAPCA believes the best time to learn about palliative care and ask about palliative care is when you are diagnosed with a serious illness.

HISTORY OF PALLIATIVE CARE 

The field of palliative care grew out the hospice movement, which is commonly associated (like hospice care) with Dame Cicely Saunders, who founded St. Christopher's Hospice for the terminally ill in 1967, and Elisabeth Kübler-Ross who published her seminal work "On Death and Dying" in 1969.

WHAT IS PALLIATIVE CARE?  

Palliative Care improves the quality of life of patients and their families by relieving the pain, symptoms and stress of a serious or debilitating illness. Designed to help patients feel better, palliative care can help to relieve symptoms such as loss of appetite, pain, nausea and sleeplessness, as well as provide help with health care decision making, managing health care and supporting family members.

HOW DOES PALLIATIVE CARE WORK? 

Individuals are usually referred to palliative care at the onset of a serious illness by their physician. You can also ask your physician about palliative care. The intention of palliative care is to provide information to the patient and family so they can determine their goals and desired outcomes.   

WHAT SERVICES ARE INCLUDED? 

Palliative care is most often provided by a team of professionals. Clinical evaluation and care discussions are usually provided by physicians, nurse practitioners and RNs. At times, social workers and chaplains are also involved. Be sure to ask who makes up the team of professionals a provider offers.  

Palliative care programs may include the following services: 

  • Improving quality of life for both the patient and the family 
  • Minimizing pain and discomfort 
  • Alleviating emotional distress, anxiety, or depression 
  • Assisting with safety, mobility, and equipment 
  • Spiritual counseling 
  • Empowering patients and caregivers to make the right decisions 

WHAT IS NOT COVERED? 

Palliative care services offered will depend on your insurance plan and program services offered by providers. Call your insurance carrier to inquire about palliative care services.  

HOW DO I ASK FOR PALLIATIVE CARE? 

You don’t have to wait until your physician brings up palliative care. Asking your physician  to explain  your  illness and any current or future treatments and procedures that you may require as your disease progresses. Telling your physician exactly what quality of life means to you will assist you, your physician and family in making an informed decision about the care you want.  

ARE THERE DIFFERENT TYPES OF PALLIATIVE CARE PROGRAMS?  

Yes. Palliative care programs will be different based on your insurance plan or palliative care program. Some palliative care programs you will go see professional in an office or hospital. Sometimes palliative care professionals will come to your home to see you. Be sure to ask about how palliative services are delivered when you meet or call a palliative care program.  

WHO PAYS FOR PALLIATIVE CARE?  

Palliative care covered services will be different by insurance benefit plans. 

CAN I CHANGE MY MIND?  

Yes. Talk with your physician about what program best meets your care needs.  

CHOOSING A PALLIATIVE CARE PROGRAM.  

Talk with your physician or insurance plan about palliative care programs in your area.


DON'T WAIT TO TALK ABOUT THE CARE YOU WOULD WANT

Unfortunately, the following situation is one that’s far too common and happens every day all across the country.

A family is gathered by the bedside of a loved one who has been seriously ill, and now is likely near the end of life. Each member of the family has a different idea of what should be done and what their loved one would have wanted. Throughout the course of the illness, the family never discussed what the care priorities should be in the final months and weeks of life.

Even in the final days of life, these important decisions go unaddressed. This can leave a dark shadow over the death of a loved one that can linger long in the memory of family and dear friends. No one wants to think they might have done more after a person is already gone.

Hospice and palliative care professionals see such challenging situations every day. It’s difficult to know if more could have been done for your loved one. CHAPCA recommends learning more about hospice and palliative care long before you or your loved one might need it. Don’t wait until you are in the midst of a healthcare crisis. When a family is coping with a serious illness and a cure is no longer possible, hospice provides the type of care most people say they want at the end of life: comfort and dignity. Hospice providers can help with information about care options and choices and ensure you live as fully as possible throughout your entire life. They will make sure your loved ones receive support as well. One of the best ways to make sure you and your loved ones benefit fully from hospice and palliative care is to talk about it before it becomes an issue.

Approaches to Talking about Hospice

When faced with a life-limiting illness, you or your loved ones may be thinking about hospice care but may find it hard to bring the topic up with each other or with doctors. Here are some approaches that can be helpful when talking with loved ones.

Choose the Right Time and Place

Plan for the conversation. Find a time that is free of interruptions. Let the conversation unfold naturally. Maybe you will bring the topic up initially and revisit it again later.

Be Sensitive

People cope with end-of-life issues in many ways. People who are seriously ill need to feel they have choices. As you mention hospice as an option, remember to let your loved one know that they can change their mind at any time. Starting with hospice is not a commitment, but a way to get more support and have new choices.

Be a Good Listener

Be willing to listen with an open mind and heart. Listen for the wants and needs your loved one expresses. These moments, although sometimes difficult, are important to both of you.

Situations Other Families Have Faced

“Mom doesn’t want to talk about hospice, but the rest of us need help. What can we do?”

Most patients don’t want their loved ones to be burdened by their illness. Help your loved one understand that the greatest gift they can give their family is the ability to spend quality time with each other. Hospice supports the entire family so everyone can be physically and emotionally able to focus on what matters most to them at this very important time.

“I don’t want my husband to feel that I’m giving up on him. Won’t talking about hospice give that impression?”

This is a common concern. It’s important to remember that when patients choose hospice care, they’re not giving up – they’re gaining support and choices. We can meet with your loved one in person to talk about their health needs, learn their personal feelings and desires, and introduce the concept of hospice care. These conversations usually go more smoothly than families imagined possible and are often welcomed by the patient.

“The doctor hasn’t said anything to us about hospice care. Should we bring it up?”

Yes. Many doctors do not bring up hospice care because they don’t want to discourage a patient’s hope. They may actually be relieved if you bring up the topic. If you feel hospice may be a good option – now or in the future – let the doctor know your thoughts. If you are hesitant to talk to the doctor directly, a hospice can help with that communication.

“My grandmother is in the hospital and we’re wondering if hospice could help. How do we find out more?”

Hospital social workers and discharge planners should be knowledgeable about the many services provided by hospice. They can help with a referral to a hospice program. If you haven’t already had direct contact with a social worker, ask your doctor, a nurse or chaplain to put you in touch with one.


It’s You and Me, Kid! Caregiving, What’s Your Plan?

It’s hard to think of anything more draining than taking care of a loved one, but at some point, there’s a good chance you’ll find yourself taking care of someone else, whether that be a child, elderly parent or an ill partner. Whether you are thrust into the role suddenly and unexpectedly or gradually, it’s always a good idea to have a plan.

A primary caregiver takes responsibility for the care of a friend or loved one who is not able to care for themselves. Primary caregivers may be caring for children, a senior, a spouse with a life limiting illness, or any friend or family member who requires assistance with daily activities.

You don’t have to be a professional to be a primary caregiver. Aging parents often cause a role reversal, where adult children end up taking care of their senior parents. Spouses can also become the primary caregiver when one partner becomes ill, either temporarily or on a long-term basis. This often happens in cases of Alzheimer’s.

You are Not Alone

According to AARP, as of 2020, more than one in five Americans (21.3%), or 50.3 million adults in the United States, were caring for an adult loved one or a child with special needs, up from 43.5 million caregivers in 2015. Caregiving for adults only has risen from about 17% in 2015 to just over 19% in 2020, an increase of more than 8 million adults.

Planning for the Future

Caring for someone is ongoing and the situation has the potential to change rapidly. Even young, healthy people can find themselves in situations they could never have imagined. Without a plan, the result can be chaos.

The primary reason people don’t plan ahead is because they find it difficult to come to terms with potential consequences of illness, old age and even death. They want to live in denial rather than deal with practical matters. Someone with an illness may not want to face the reality of their increased dependence on others. The person you are caring for may be deeply afraid.

It is important to try to recognize the powerful emotions at play and handle the situation as sensitively as possible. Yes, they can be thorny conversations, but your life (and theirs) will be made much more difficult if they do not have their affairs in order or their wishes are not known.

Try strategies like:

  • Mention someone else in a similar situation (this could even be a person on TV) and ask your loved one what they would want to happen.
  • Start planning as early as possible. Mention that you are making a will and ask the person you are caring for if they want help with doing the same.
  • Seek advice from an attorney together. Your loved one may be more receptive to advice from professionals. Getting advice is especially important when it comes to Power of Attorney and deciding what will happen if your loved one can no longer handle their own affairs.
  • Look in your area for local resources that can assist you and your loved on with making a plan.

Practical Considerations

Finances

You and your parents need to understand the financial realities of caregiving.

Talk about what it costs for them to stay in their current house. Even if the mortgage is paid off, it is not free. Will they be able to afford to stay where they are?

Make sure you know what your parents’ insurance will cover. Be aware that long-term care insurance and Medicare/Medicaid do not pay for everything.

Understand the out-of-pocket expenses involved, which can sometimes add up to thousands of dollars. While you can claim a parent as a dependent and take medical tax deductions for their care, you need to be sure you know how you’re going to help cover upfront expenses. If you have siblings, can they help pay for care?

Legal Issues

What legal protections are needed to help the whole family if a crisis arises?

  • A power of attorney for health care or mental health care designates who can make health decisions on behalf of your parents.
  • A living will lets family and physicians know what your parents’ wishes are for medical treatment.
  • A financial power of attorney designates someone to make financial decisions on their behalf.
  • A digital power of attorney lets another person manage digital assets like social media accounts, websites, email accounts, online access to banking, investments or credit cards.

To help your family make these arrangements, you can get your state’s advanced directive planning forms or visit AARP for detailed legal information.

Documentation

It’s also important that you can identify and find other documents you’ll need as a primary caregiver. Medical records, insurance information, identity records, financial assets–having this information at your fingertips will make your job a lot easier. You can use the National Caregiver Library’s Caregiver Document Organizer to get started.

Emotional Considerations

Being a caregiver involves much more than legal and healthcare responsibilities. It’s all consuming and can be extremely emotional.

Build a Team

Forget trying to be a superhero. All that will do is cause more stress and possibly make you feel like a failure. Sure, it is easy to feel like you need to handle everything on your own. The truth is caregiving doesn’t have to be a one-person, all-or-nothing role and getting help is not failing–sometimes it’s the most sensible thing to do.

Ask to share the load with family and friends. Offer tasks they feel comfortable with, and regularly share details of your loved one’s ongoing needs to get everyone on board.

Yes, there are situations where other family members can’t, or won’t, help. Another option is to bring in professional caregivers who can develop a personal relationship with the person you care for. Professional caregivers don’t have to replace your own care–they can simply add an extra pair of hands and work as part of your team.

Manage your time

As a primary caregiver it is easy to get caught up in everything. Time management is all about prioritizing and accepting that you just won’t be able to do everything. This is especially important if you’re caring for someone while you are employed. The reality is that some things will have to be sacrificed and it helps to group your tasks according to urgency.

Get it out of your head and onto paper or your computer screen. Label your tasks as ‘Urgent – can’t wait’, ‘Important – can wait’, ‘Nice to have’, and so on. This will help you to see what needs to be done right away and if you have multiple urgent tasks and need to enlist help. Checking off completed tasks can be rewarding and contribute to a sense of accomplishment.

Watch for Burnout

Becoming someone’s caregiver is physically and emotionally demanding. You are handling all this while at the same time dealing with everyday life! All the demands will eventually take their toll.

Burnout can sneak up on you without you noticing, and is a mix of exhaustion, stress, and depression. Early signs of burnout include:

  • Lack of interest in social activities
  • Loss of interest in activities you normally enjoy
  • Anxiety and feeling low
  • Changes in sleep patterns and appetite
  • Overreacting to minor problems

It is best if you can catch the early warning signs and do something about it, before they develop into full-blown burnout. Signs you already have burnout:

  • A lack of energy, however much you sleep
  • Getting sick more often, and never feeling quite 100%
  • Your life revolves around caregiving, but you gain little satisfaction from it
  • Difficulty relaxing
  • Feelings of helplessness or anxiety that won’t go away
  • You find yourself increasingly angry with the person you’re caring for

Do not be afraid to admit when you’re feeling burned out. Allow yourself some space to gain a better perspective. Caregivers often feel guilty about taking time for themselves, but you will not have anything to give otherwise. Ask family members to step in while you have a break. If this is not possible, consider hiring a private caregiver to relieve some of the pressure.

Separate Out ‘Chores’, ‘Companion’ and ‘You’ Time

In your role of caregiver, there are many things you will need to do for your loved one to help them with day-to-day living, as well as ongoing healthcare. This can often come at the cost of ‘quality time’ with them–something you both used to enjoy.

Even if you have to pop in every day to see to the ‘chore’ aspect of caring (e.g. helping them get up, showered or take medication), make sure you also earmark some time to just talk, or share a common interest. Getting help from professional caregivers with the chore side of things can free up more of your time to spend enjoying the company of the person you love.

Find support networks

Maintaining friendship networks is so important for your own well-being and for giving you the energy to keep on caring. Unfortunately, caregivers are at a particular high risk of feeling socially isolated. They don’t have time or energy to keep up with their friends, as it is all spent caregiving. Or, their friends don’t understand their situation and they feel like they have nothing else to talk about. It can be a tough situation.

It is important to keep talking to others about what you’re going through, particularly when you’re really struggling, even though this is probably the time you want to shut yourself away the most!

Online support networks can also be a lifesaver, especially if you don’t have friends or family members who can relate. Thanks to the development of modern technology, care communities are always just a few clicks away on a tablet or smartphone. A few options include Family Caregiver Alliance or AARP to name just a couple.

Caring for someone with a serious illness can be exhausting and challenging. There is a lot to consider and we’ve only scratched the surface. The California Hospice and Palliative Care Association (CHAPCA) understands the difficulty and is here to help as hospice and palliative care subject matter experts.

Overall, just try to be realistic about the time you have to give to caring. Go into this situation with your eyes open, acknowledging the enormity of the task and what you would be giving up. Do not be afraid to ask for help (whether practical or emotional) and try not to beat yourself up if you think things have gone wrong. Remember–you are doing an incredible thing for someone else. It may be a tough journey, but you will never regret that you made the decision to care for someone. Appreciate yourself and celebrate yourself, remembering that you are strong.


Life Stories Create Memories for Loved Ones

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Every life has a story. For hospice patients and their loved ones, documenting and saving family stories for future generations can be a wonderful way to celebrate and preserve their lives and memories. 

Advocacy and education, a major part of the California Hospice and Palliative Care Association’s (CHAPCA) mission, extends beyond the clinical needs of patients to include activities that enhance quality end-of-life care for patients and  their loved ones, such as capturing a life story.

Life stories are not just nostalgia for nostalgia’s sake. At least two studies (Woods 2007; Allen 2008) found that such legacy activities have a beneficial therapeutic effect for both patients and the care team. When hospice staff and volunteers read a patient’s memoir aloud, especially dementia patients; it has the dual benefit of calming the patient and helping the staff get to learn about the person in their care. The finished memoir has a powerful effect both on the patients self-esteem and on the loved ones esteem for the patient.

Research also suggests that an activity like sharing a life story may be more beneficial than just reminiscing, according to Gene. D. Cohen, Director of the Center on Aging, Health and Humanities at George Washington University. He explains that it also gives people an opportunity to reexamine and assess their lives, looking back not only at what happened but at what they learned from it.

He goes on to explain that autobiography, because it engages both sides of the brain, is like “chocolate for the brain,” and that as people age, they have a stronger impulse to tell their life story because they “become appealing ways of giving back—sharing what we have learned” (Cohen 2007).

Telling a person’s life story can be so powerful that, for the last 25 years, it has become an important part of care for older adults. An academic conference held in 1995 led to the formation of the International Institute for Reminiscence and Life Review, an academically based organization that has helped increase interest in incorporating reminiscence and life review activities into the care and treatment of older adults. “The known advantages of doing such work,” wrote John A. Kunz (2007), “include improving the attitudes of younger adults toward older adults and vice versa, finding meaning in life, improving problem-solving skills, assisting with the grief process, increasing emotional support, strengthening self-esteem, decreasing depression and anxiety, and developing interventions for individuals with dementia.”

One of the best gifts you can give someone, especially the elderly, is to listen to them. When you take the time to listen, you are telling that person that what they’ve done, and the things they care about are important.

Anyone can create a life story for themselves or a loved one. Hospice and palliative care team members can help in a variety of ways, whether it’s sharing snippets of information patients have told them or helping a person conduct an interview. It’s as simple as setting aside some time and really listening. Before you begin, think about whether you want a written, audio or video version. New technologies make it easy to “self-publish” a printed book or mount a story on a website. A rapidly growing number of personal historians create audio or video histories or tributes instead—the videos sometimes illustrated with photos and sound, including recordings and videos of people telling stories, sometimes a montage of stills with narration and reminiscence in one or more voices.

Here are a few tips to create a life story:

  • Prepare your questions in advance.
  • Set aside a quiet time and place free from interruptions and test your equipment before starting.
  • Ask open-ended questions like: Tell me about… Describe… What was it like when… In what ways…. Why…. and How…
  • Start with easy, friendly questions and work your way up to more difficult or sensitive questions.
  • Listen carefully to what the person says; don’t interrupt or correct. Maintain eye contact and show interest by leaning forward and nodding.
  • Photos, mementos, or other visual aids are great memory-joggers, have some ready if necessary.
  • Don’t try to force any subject they are uncomfortable discussing. If the person doesn’t want to talk about something, just go to the next question.
  • As you listen to answers, other questions will come to mind. Asking follow-up questions will help you get more information.

Hospice and palliative care team members lend their support and services in a variety of ways and may be able to help you create a life story for your loved one. 

Honor your loved one by supporting the hospice community. 


 

ADVANCE CARE PLANNING | MAKING YOUR WISHES KNOWN

There is nothing quite like a pandemic to emphasize the need to document advanced healthcare preferences. Not many people want to think about their death, but COVID-19 has reminded us that it’s important for everyone, people of all ages and all states of illness or health, to actually think these things through.

There are several advantages to getting your affairs in order. Communicating your wishes about the kind of care you want or don’t want can make an enormous difference to healthcare providers, loved ones and the patient.

  • It gives health providers tools to create a plan of care that meets both treatment and quality-of-life goals when you can’t speak for yourself.
  • It makes loved ones confident that they are honoring your wishes and helps reduce confusion, conflict, and feelings of guilt.
  • Research also found that taking the steps to create a plan also improves patient quality of life and reduces anxiety.

What is an Advance Directive?

Many people may have heard of advance directives and living wills but are still not quite sure what doctors are talking about when they mention advance care planning. Living wills and other advance directives are written, legal instructions regarding your preferences for medical care if you are unable to make decisions for yourself. Advance care planning refers to a whole process including reflection on what’s important to you in terms of quality of life; learning about options, such as palliative and hospice care; and having honest discussions with others, as well creating an advance care directive.

What Type of Things Are Included?

Power of attorney

A medical or healthcare power of attorney is a type of advance directive in which you name a person to make decisions for you when you are unable to do so. In some states this directive may also be called a durable power of attorney for health care or a health care proxy.

Depending on where you live, the person you choose to make decisions on your behalf may be called one of the following:

  • Healthcare agent
  • Healthcare proxy
  • Healthcare surrogate
  • Healthcare representative
  • Healthcare attorney-in-fact
  • Patient advocate

Choosing a person to act as your healthcare agent is important. Even if you have other legal documents regarding your care, not all situations can be anticipated, and some situations will require someone to make a judgment about your likely care wishes. You should choose a person who meets the following criteria:

  • Meets your state's requirements for a healthcare agent
  • Is not your doctor or a part of your medical care team
  • Is willing and able to discuss medical care and end-of-life issues with you
  • Can be trusted to make decisions that adhere to your wishes and values
  • Can be trusted to be your advocate if there are disagreements about your care

The person you name may be a spouse, other family member, friend, or member of a faith community. You may also choose one or more alternates in case the person you chose is unable to fulfill the role.

Living will

A living will is a written, legal document that spells out medical treatments you would and would not want to be used to keep you alive, as well as your preferences for other medical decisions, such as pain management or organ donation.

In determining your wishes, think about your values. Consider how important it is to you to be independent and self-sufficient and identify what circumstances might make you feel like your life is not worth living. Would you want treatment to extend your life in any situation? All situations? Would you want treatment only if a cure is possible?

You should address a number of possible end-of-life care decisions in your living will. Talk to your doctor if you have questions about any of the following medical decisions:

  • Cardiopulmonary resuscitation (CPR) restarts the heart when it has stopped beating. Determine if and when you would want to be resuscitated by CPR or by a device that delivers an electric shock to stimulate the heart.
  • Mechanical ventilation takes over your breathing if you are unable to breathe on your own. Consider if, when and for how long you would want to be placed on a mechanical ventilator.
  • Tube feeding supplies the body with nutrients and fluids intravenously or via a tube in the stomach. Decide if, when and for how long you would want to be fed in this manner.
  • Dialysis removes waste from your blood and manages fluid levels if your kidneys no longer function. Determine if, when and for how long you would want to receive this treatment.
  • Antibiotics or antiviral medications can be used to treat many infections. If you were near the end of life, would you want infections to be treated aggressively or would you rather let infections run their course?
  • Hospice or Palliative care includes any number of interventions that may be used to keep you comfortable and manage pain while abiding by your other treatment wishes. This may include being allowed to die at home, getting pain medications, being fed ice chips to soothe mouth dryness and avoiding invasive tests or treatments.
  • Organ and tissue donations for transplantation can be specified in your living will. If your organs are removed for donation, you will be kept on life-sustaining treatment temporarily until the procedure is complete. To help your healthcare agent avoid any confusion, you may want to state in your living will that you understand the need for this temporary intervention.
  • Donating your body for scientific study also can be specified. Contact a local medical school, university, or donation program for information on how to register for a planned donation for research.

Do Not Resuscitate (DNR) and Do Not Intubate Orders (DNI)

You don't need to have an advance directive or living will to have DNR and/or DNI orders. To establish DNR or DNI orders, tell your doctor about your preferences. He or she will write the orders and put them in your medical record.

Even if you already have a living will stating your preferences regarding resuscitation and intubation, it is still a good idea to establish DNR or DNI orders each time you are admitted to a new hospital or healthcare facility.

Creating Advance Directives

Advance directives need to be in writing. Each state has different forms and requirements for creating legal documents. Depending on where you live, a form may need to be signed by a witness or notarized. You can ask a lawyer to help you with the process, but it is generally not necessary.

Links to state-specific forms can be found on the websites of various organizations such as the American Bar Association, AARP and the California Hospice and Palliative Care.

Review your advance directives with your doctor and your health care agent to be sure you have filled out forms correctly. When you have completed your documents, you need to do the following:

  • Keep the originals in a safe but easily accessible place
  • Give a copy to your doctor
  • Give a copy to your healthcare agent and any alternate agents
  • Keep a record of who has your advance directives
  • Talk to family members and other important people in your life about your advance directives and your healthcare wishes
  • Carry a wallet-sized card that indicates you have advance directives, identifies your health care agent and states where a copy of your directives can be found
  • Keep a copy with you when you are traveling

Reviewing and Changing Advance Directives

You can change your directives at any time. If you want to make changes, you must create a new form, distribute new copies, and destroy all old copies. Specific requirements for changing directives may vary by state.

You should discuss changes with your primary care doctor and make sure a new directive replaces an old directive in your medical file. New directives must also be added to medical charts in a hospital or nursing home. Also, talk to your healthcare agent, family and friends about changes you have made.

Consider reviewing your directives and creating new ones in the following situations:

  • New diagnosis
  • Change of marital status
  • About every 10 years

Physician Orders for Life-Sustaining Treatment (POLST)

Advance directives in some states include a document called POLST. The document may also be called medical orders for life-sustaining treatment (MOLST).

A POLST is intended for people who have already been diagnosed with a serious illness. This form does not replace your other directives. Instead, it serves as doctor-ordered instructions— not unlike a prescription—to ensure that, in case of an emergency, you receive the treatment you prefer. Your doctor will fill out the form based on the contents of your advance directives, the discussions you have with your doctor about the likely course of your illness and your treatment preferences.

A POLST stays with you. If you are in a hospital or nursing home, the document is posted near your bed. If you are living at home or in a hospice care facility, the document is prominently displayed where emergency personnel or other medical team members can easily find it.

Forms vary by state, but essentially a POLST enables your doctor to include details about what treatments not to use, under what conditions certain treatments can be used, how long treatments may be used and when treatments should be withdrawn. Issues covered in a POLST may include:

  • Resuscitation
  • Mechanical ventilation
  • Tube feeding
  • Use of antibiotics
  • Requests not to transfer to an emergency room
  • Requests not to be admitted to the hospital
  • Pain management

A POLST also indicates what advance directives you have created and who serves as your healthcare agent. Like advance directives, POLSTs can also be canceled or updated.

We make plans for many parts of our lives, from major decisions such as purchasing a home to training for a marathon. Yet, when it comes to planning for future healthcare needs, especially how we want to live if faced with a serious or life-limiting illness, we’re not nearly as inclined to create a plan and put our wishes in writing. There is a lot to consider, but taking that step now, as uncomfortable as it may be to face your own mortality, will pave the way for the best outcome.

Advanced Care Planning FAQ

What is an advance health care directive?

An advance health care directive is a written expression of what a person does and doesn’t want if he or she becomes ill and can’t communicate or make decisions. The directive contains written instructions concerning future medical care and/or names your healthcare decision maker to act on your behalf when you are not able to act for yourself. 

Where can I get an advance health care directive form?

You don’t have to use a special form as long as it meets legal requirements in the state where you live.  For the form to be legal in California, it requires a signature, date and two witnesses (plus special requirements for residents of skilled nursing facilities or assisted living).  If you choose to use a form, they are available at no cost from many sources, including physicians and hospitals, insurance plans and from the Internet. A form is available below.

When should I complete an advance health care directive form?

There’s no time like the present.  You don’t have to wait until you’re facing a medical procedure or hospitalization.  In fact, it is far better to talk about your preferences when you are well so that you and others are not under pressure or in the emotional turmoil caused by an accident or sudden aggressive illness.  Advance planning can give everyone concerned peace of mind, an opportunity to discuss very difficult issues, and share decision-making.

Talking about the possibility of death makes me and others uncomfortable.  Why should I do this?

Any questions, conversations and discussion about end of life issues are, of necessity, difficult and often complicated.  But to avoid thinking about dying does not mean that by some unknown magic all will disappear.  If we don’t find the time to make these decisions, it only means that someone else will make those decisions for us.  The key question for this discussion is simple.  What do you want?  Don’t let that question go unanswered.  Talk about what you want, talk about what they want, talk to your spouse, your friends, your older kids (they have things they want also!)  Take the time for each of you to complete an advance directive.  Letting those closest to you know what you want and helping others to express what they want is one of the most loving acts a person can perform.

Do I need an attorney to complete an advance health care directive?

No.  Any type of form is legal in California as long as it has your signature, date and the signature of two qualified witnesses.  If you live in a skilled nursing facility in California, there are special witnessing requirements including the signature of the patient advocate or ombudsman.  You might want to consult an attorney if you live for part of the year out of state or you have concerns.

Is it enough to complete an advance health care directive form?

Completing the Advance health care directive paperwork will not guarantee that your wishes will be followed.  Having what you want in writing is a great beginning.  Your diligence in talking with your family and your physician about what you want is very important.  In addition, the advance health care directive form allows you to name someone who can advocate for your wishes if you become unable to communicate them yourself.  It is essential that this person be totally aware of your wishes and that they be prepared to speak up.   

How do I choose a health care agent to speak for me?  Do I have to appoint a health care agent?

You don’t have to appoint a health care agent, but it can be very comforting to know that someone you trust can speak for you if needed.  If you lose capacity to make decisions, someone will have to make decisions on your behalf. Your agent must be an adult and should be a person who knows you well enough to be able to make healthcare decisions for you.  You also must have many conversations with this person to assure they know what you want.  Can they actually make the hard decisions you want them to make? Will they be able to deal with the health care system?  Some examples of those decisions include: selection and discharge of health care providers and institutions, approval or disapproval of tests, procedures, and medication; directions to withdraw or withhold all forms of healthcare, including hydration and nutrition.

Do I have to have a written form to make my wishes legal?

No.  Oral instructions to your family or physician are just as legal as written ones.  You should know that oral instructions only apply to the duration of your stay in a healthcare facility.  Keep in mind, however, that many disputes arise because a health care agent, physician and family have different interpretations of oral instructions.  Physicians are required to note any instructions that you give them in your medical record.  The clearer you are about your wishes and the more you reinforce them in writing, the more likely that disagreements will be avoided.

May I change or revoke my advance health care directive form?

Yes.  The advance healthcare directive can be changed or revoked at any time.  This is usually a process, not a single event.  You and your family, your legally recognized healthcare decision maker (also known as your proxy, agent or surrogate) and your health care provider should periodically talk about your wishes.  For example, if your health status should change or if you are diagnosed with a particular disease, ask your physician what to expect, and ask about treatment options.  Discuss the benefits and the possible problems with treatment.  Review your advance health care directive and change accordingly.  To revoke your form, notify your appointed health care agent and your physician, verbally or in writing and every individual who has a copy of your advance health directive form. To change your health care agent, tell your physician verbally or in writing.  Executing a new Advance Health Care Directive is the easiest way to officially change your wishes, as this is a dated witnessed form. 

Where should I keep my completed advance health care directive form?

Make copies for your family, your agent, your physician, your hospital medical record, even your spiritual advisor.  Keep a list of everyone who has a copy so you can update them if you update your advance directive.  Keep your original in an easily accessible place.

Start Today - Download your Form Here

Advance Directive - English
Advance Directive - Spanish
Advance Directive - Chinese

Call CHAPCA if you have any questions or need any assistance in regards to Advance Directives. 

"The future depends on what we do in the present"
- Mahatma 
Gandhi


CHOOSING A HOSPICE OR PALLIATIVE CARE PROGRAM

Hospice and Palliative Care providers can be found on CHAPCA's website. Not all hospice providers provide palliative care. CHAPCA's provider profiles found through our directory will indicate if the provider has a palliative care program. Call CHAPCA if you have any questions or need any assistance in locating a provider in your area. 

To locate a hospice in your area, click the link below:

Find a Hospice or Palliative Care Provider

Medicare.gov hospice resources

Find hospices that serve your area and compare them based on the quality of care they provide. Medicare's website has helpful tools, tips and additional information so you can make an informed choice about your healthcare.

COMPARE HOSPICES

MEDICARE HOSPICE HANDBOOK

In many communities there are several competing hospices from which to choose. Consider the following when comparing hospices:

  • From the very first phone call, is staff helpful, concerned? Do they answer your questions?
  • If you are uncertain about whether hospice is right for you, do they offer an initial consultation so you have an opportunity to ask questions and determine what you want?
  • Are you within their geographic service area?
  • How quickly will the hospice services begin?
  • What is expected from the family caregiver? Will they help you find additional help if needed?
  • What will their responsibilities be? What members of the hospice team will you see and how often?
  • Do they have a relationship with your personal physician?
  • Ask them to explain their 24/7 availability in a situation when you need immediate help.
  • How do they define "palliative" or comfort care? Are certain treatments automatically excluded? If you require expensive therapies or devices to manage pain and other symptoms, will they be available?
  • What out-of-pocket expenses should you expect?
  • Do they provide services for residents in different settings? A nursing home? An assisted living facility?

CHAPCA Choices - Community Newsletter

Our community newsletter, Choices, is mailed three to four times per year and offers new educational materials, current research and articles relating to end-of-life.

Choices plays a critical role in providing information and support regarding significant issues to individuals and their families and to the Friends of Hospice. The newsletter is mailed to all current donors, to Friends of Hospice, and to others who are interested.

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The Conversation Project - Conversation Tools and Resources

The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. The Conversation Project is an initiative of the Institute for Healthcare Improvement, a not-for-profit organization that is a leader in health and health care improvement worldwide. Visit here

YOU MAY FIND THE ADDITIONAL WEBSITES HELPFUL