PALLIATIVE CARE SERVICES AND RESOURCES. A guide for patients and their loved ones. Living well with serious illness

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1 PALLIATIVE CARE SERVICES AND RESOURCES A guide for patients and their loved ones Living well with serious illness

2 A patient and family centered approach to living with serious illness Palliative care addresses the complex physical, emotional, social and spiritual needs that may accompany your illness and treatment. At Mayo Clinic Health System, our palliative care team helps you live well in the face of physical changes and personal challenges, while supporting the people you love, and who love you. Since no two people are alike, we work closely with you and your family to make living with your illness better for you. We talk honestly, as often as necessary, about ways to improve your life: physically, emotionally and spiritually. Then we help to make those things happen. I have made more progress in the past three weeks than I have in the past six years of my journey. Just knowing I have this type of support is very comforting. Talking to someone who knows how I am feeling or who will help me bring up those tough conversations that nobody ever wants to have but needs to happen it s been really hard on everybody, but the support has made such a difference. WHAT IS PALLIATIVE CARE? For many patients, palliative care starts shortly after the diagnosis of a serious illness and focuses on improving a person s quality of life throughout the course of the illness. Patients often receive palliative care along with other medical treatments, such as intensive care, cardiac or cancer care, and hospice care. ABOUT PALLIATIVE CARE AT MAYO CLINIC HEALTH SYSTEM Mayo Clinic Health System s palliative care team is committed to improving your comfort and quality of life, and the lives of all those affected by serious or life-threatening illnesses. We are dedicated to providing excellent care, as well as building a better future through research and education for professionals and the public that improve the quality of and access to these important services. Becky Hewitt palliative care patient

3 Support and understanding from a specially trained team of professionals Your palliative care team includes professionals and clinicians with diverse training, skills and talents. We are experienced in counseling individuals and families through what can be the most difficult times in their lives. Our palliative care team includes: Services and resources for you and your loved ones Palliative care addresses you as a whole person: your physical comfort, confidence, emotional well-being, spirituality and dignity. Since your family is also involved in your illness, palliative care supports them and helps them feel informed, as well. Some of our palliative care services include: Specialized physicians, nurses and nurse practitioners Social workers for support, counseling and legacy development Healing arts practitioners for massage and other soothing therapies A chaplain who can offer support and guidance around personal issues of meaning and purpose during times of change Carefully selected and trained volunteers from the community, who can provide companionship during sometimes long and lonely hospital days Members of our extended team, such as physical and speech therapists, hospice and home health liaisons, pharmacists and others as needed Expert management of pain and physical symptoms that can make living hard. Our palliative care physicians and nurse practitioners are specialists in symptom management Care coordination between your primary and specialty care physicians, therapists and other members of your health care team Crisis prevention and management plans Extending spiritual care to people of all faiths and beliefs Social work and advocacy services provide counseling, bereavement support and legacy development for family and friends Support for families and friends who are grieving a person s death Care planning to help you get the best care possible, including creating advance directive documents Thank you for today! We feel like a burden has been lifted. After our palliative care consultation, we have direction and support. We are so grateful for these services. Randy and Colleen Campbell palliative care patient and his family

4 I m so sick of being sick, and of the energy and time that health care takes from my everyday life. Do I really need to add palliative care to my long list of appointments? If you are feeling that way, most likely the answer is yes. Feeling overwhelmed is a common challenge of illness and modern treatment. Palliative care services are designed to reduce, not add to, the stress, anxiety and energy-sapping effects of illness. Your appointments will fit your needs and be focused on what matters most to you at that very moment. Together, we can help ease the struggle and exhaustion of being sick. You may be wondering... What happens to me now that I ve been referred to palliative care? We begin by getting to know one another. At our first meeting, we discuss what matters most to you and your loved ones, including your personal values and treatment preferences. Then, we work together you, your family, your doctor and your palliative care providers to help you live well with your conditions and treatments. Here are some questions we know people often have (but rarely ask). Does referral to palliative care mean I m dying? No. Receiving palliative care does not mean you re dying. In fact, recent research indicates that palliative care can help people live longer, by addressing pain and reducing stress. Being referred to palliative care does mean that you are dealing with difficult medical problems ones that can cause pain, emotional uncertainty and personal complications for you and the people you love. I m worried about my family and the toll my illness seems to be taking. Can you help them? Yes. Your family helps make you who you are, and they play an important part in your health. We welcome the chance to meet and talk with your spouse, parents, siblings, children and others you love. When people hear I m about to receive palliative care, they assume it s hospice and that I m dying. Are they right? No. It s a common misunderstanding. Palliative care grew from the great things that hospice has done for people facing the end of their lives. We learned that the positive experiences and exceptional care people receive as part of hospice actually make life worth living for many patients. The palliative care team at Mayo Clinic Health System brings similar services to people during the course of illness, allowing full and active living within the limitations caused by a medical condition. Do I need to stop medical treatments in order to receive palliative care? No. We support doing whatever is right for you. Many of the patients we serve are receiving treatments, such as chemotherapy or radiation for cancer, cardiac procedures such as angiography or pacemakers, and surgery. You may choose to enroll in clinical trials that offer experimental approaches for your condition. If difficult decisions about treatments arise, we can help you sort through the options. Will my insurance company cover palliative care? Most insurers and health plans pay for medical components of palliative care. We are fortunate to have institutional support from Mayo Clinic Health System and private donations that enable us to provide interdisciplinary palliative care to people regardless of any insurance limitations or their ability to pay.

5 We re eager to meet you and your family, and learn what matters most to you WELCOME! Palliative care contact information for: We are looking forward to our meeting on: (day) (date) at Until then, you may find this information helpful. Your palliative care provider is: / (name/phone) If you need to change or cancel your appointment, please call us at (507) , ext Whenever possible, please give us a day of advance notice. You can speak to someone in palliative care weekdays between 8 a.m. and 5 p.m. by calling , ext q a.m. q p.m. We are here to help.