It's the most important issue nobody ever talks about. Be they healthcare decisions, palliative care, hospice care, or financial planning, end-of-life decisions are critically important and should not be left to be addressed once you or your loved one are in the midst of a terminal illness. Jon Radulovic is vice president of communications for the National Hospice and Palliative Care Organization (NHPCO), which aims to improve end-of-life care.
Tell us about Caring Connections.
Jon Radulovic, vice president of communications: Caring Connections is a national consumer and community engagement initiative working to improve care at the end of life. Caring Connections is a program of the National Hospice and Palliative Care Organization, which works on behalf of hospice and palliative care professionals and providers. Caring Connections offers information about advance care planning, communicating with your doctor and your loved ones, coping with pain, living with a serious illness, understanding hospice and palliative care, coping with grief and loss, and related issues. Since 2004, Caring Connections has provided more than 1.3 million advance directives to individuals free of charge. Caring Connections also provides tools to help organizations working at the community, state, and national levels to improve end-of-life care. Resources to help faith communities, employers, and veterans groups have helped communities have important conversations about caregiving, illness, grief, and advance care planning.
So many people don't think about hospice care until they are faced with having to choose the hospice option for themselves or a loved one, a moment of intense emotion for all involved. What are the key issues people should consider when considering hospice?
JR: Many people never think about hospice until the final days or even hours of life, thereby delaying or missing access to one the most generous benefits Medicare provides -- hospice. One of the key things that we try to help people understand is that the time to think about end of life is long before he or she is in a healthcare crisis. When you or a family member are faced with a medical crisis, it can be hard to think about, let alone talk about, the shift from trying to cure an illness to comfort care. That's why we encourage all people to have conversations about advance care planning early. It's important for patients and families that are dealing with a diagnosis of a serious illness to talk about what would be important if cure is no longer possible or if the side effects from the treatments are too overwhelming. Again, thinking about this and talking with loved ones long before a person is in a medical crisis can mean the difference between dignity and compassion at the end of life or a difficult experience for the patient and loved ones. We should add that talking about these issues while facing a serious or life-limiting illness is very hard. We have heard from thousands of people, that knowing a person's wishes can bring peace of mind to everyone "“ and that can be a valuable gift when someone is dying. Hospice providers are always happy to talk with families about advance care planning as well as the care and services they offer, so it's never too early to make the call and learn more about hospice or palliative care in your community. Visit www.CaringInfo.org or call (800) 658-8898 to find a hospice in your area.
Hospice care and palliative care are often confused. What is the difference? Why is it important for caregivers to know the difference?
JR: The philosophy of care is the same for both hospice and palliative care. They both focus on whole-person care -- they provide pain and symptom relief while also offering support for emotional and spiritual needs. Family caregivers also receive support and information to help them with the important role they play.
Hospice care focuses on caring, not curing, and, in most cases, care is provided in the person's home. Under Medicare guidelines, someone is eligible for hospice when a doctor states that the person might die within six months if the disease follows the expected course. Care may be provided longer than six months, but the person must meet that initial criteria for care to continue. Hospice care also is provided in freestanding hospice centers, hospitals, and nursing homes and other long-term care facilities. Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations. The hospice benefit pays for most medications, medical equipment, and access to a team of professionals and volunteers. Hospice also supports the family and friends through the grief process.
Palliative care is appropriate for anyone with a serious illness, regardless of life expectancy. One of the things that makes it different from hospice is that a person may receive palliative care and curative care at the same time. The goal, like hospice, is to relieve pain and suffering and provide necessary emotional and spiritual support. Hospices are the leading providers of palliative care services in the U.S.; additionally, many hospitals have palliative care programs available to patients while they are in the hospital.
Advance care planning can make caregiving, decision-making, and managing the illness/condition easier and less stressful for everyone involved. What issues should everyone consider as part of an advance care plan?
JR: It's important to remember that no two people have the same wishes when facing a serious illness, so we encourage people to talk frankly with their family, loved ones, and care providers about what they want. Often people assume that those caring for them know exactly what their wishes would be, but without ever talking about it, that's not usually the case. Part of the advance care planning process involves appointing a healthcare agent. This person would speak for you -- regarding your medical care -- if you are not able to communicate yourself. Part of an advance directive form spells out who your healthcare agent would be. Knowing you have chosen that individual and made your wishes known to him or her can be a significant step to making an illness less stressful. Advance care planning is a process that allows people to explore how they would want care decisions to be made in the event that they weren't physically able to make the decisions for themselves. Some people hope to extend life as long as possible, while others express a desire to focus on relief of pain and other symptoms so they can, to the extent possible, enjoy each day of their life.
Caring Connections offers all the information you need to begin those conversations and then complete an advance directive. State-specific advance directive forms can be downloaded from our website, www.CaringInfo.org, free of charge.
Why should people have an advance directive? What are the most essential issues to address in one?
JR: Advance directives include two separate forms: designation of a healthcare agent and a living will. Complete both the living will and healthcare agent parts of the document -- or simply name your healthcare agent -- as long as it's signed, it is still legal.
A healthcare agent is someone who you choose to speak for you in the event you cannot talk with your doctor about your care decisions. It is important for everyone, at every age, to name a healthcare decision maker. If you are in an accident, have surgery, become unconscious, or have a sudden serious illness and can't talk to your doctors, the law in your state decides who can speak for you. If you are married, then your spouse is typically your default decision maker. If you are an unmarried adult, the decision maker could be your parents, siblings, or adult children. That person may not be the right person to speak on your behalf. We encourage people to select an agent who knows you well, is not afraid of speaking up and asking doctors questions, and who understands how you would want healthcare decisions made.
A living will allows you to document very specific treatments that you would or would not want during a medical crisis. These decisions can include whether you would want to be put on a respirator (a machine to breathe for you), whether you would want a feeding tube, and whether you would want all measures available to keep you alive. Some of those questions may be hard to answer. Your healthcare providers can help you understand some of the medical terms and issues that are more complicated. In some cases or at some points in your life you may want more intensive interventions, while at other points in your life and under other medical conditions you might have different thoughts about the medical procedures you might chose to have. Again, what is so important is that you talk about what would be important to you long before you are faced with a medical crisis. And you should remember that you can change your advance directive or the person you've designated as your healthcare agent at any time. It should also be noted that you do not need a lawyer to complete an advance directive. Visit www.CaringInfo.org/planningahead for a wealth of information to help you.
The average lifespan is approaching 80 years of age, compared to 54 years of age in 1920. Not surprisingly, caregiving has become an increasingly larger role in our society and is often filled by friends and family members who lack formal experience as caregivers. How can people best prepare for their role as caregivers?
JR: One thing family caregivers should do is ask lots of questions from care providers, like doctors and nurses serving their loved ones. There are a number of websites that offer information specifically for family caregivers as well as support networks that can be invaluable. Often caregivers worry about becoming a burden to friends, neighbors, and coworkers or people in their faith community. One of the most difficult yet important things a caregiver can do is ask for help. If you need someone to drive you somewhere, ask. If you need help preparing meals, ask. And if you just need to have some time for yourself, ask. Caring Connections offers information to people who are caring for someone with a serious and life-limiting illness. And when a person is receiving hospice care, the hospice team will help family caregivers by training them for some of the tasks they'll have to do.
Lastly, how can people get involved with, or donate to, Caring Connections?
JR: Caring Connections benefits from the generosity of those who want our work to continue. These donations make it possible for us to continue to have free resources on our website and still mail advance directives to people without access to the Internet. Donations support this important work and may be made through our affiliate organization, the National Hospice Foundation. Complete information about supporting Caring Connections is available online at www.CaringInfo.org/support. We also ask people to let others know about our website and resources. Our hope is that everyone living with an illness, caregiving for someone, or grieving a loss can find the information and support they need. We are honored to be a trusted resource for those in need.
Visit Caring Connections at www.CaringInfo.org or contact the HelpLine at (800) 658-8898.