Hospice Giving Foundation encourages innovative approaches to expanding end-of-life care in our community. To that end, we conduct and support outreach and education to facilitate professional learning as well as for families and individuals to plan and prepare for end-of-life. HGF also provides a variety of online resources and links to nearby services.
Notes to My Family was created to help individuals leave to their family members the comforting gift of information in advance. At Hospice Giving Foundation, we have learned that the end-of-life process is often consumed by gathering of these details and information, rather than cherishing precious moments and celebrating the life of a loved one with that person.
Notes to My Family is a planning tool that gives you a convenient place to express your wishes for end-of-life care and to catalog important information. Hospice Giving Foundation is pleased to present Notes to My Family online, providing a digital way to gather the story and details of your life all in one place. Notes to My Family is organized into four easy to manage modules. Throughout Notes to My Family, we will remind you how to protect your privacy and sensitive personal information.
We suggest you begin by reviewing each section, to get a feel for what kind of information you want to gather. Think about the people with whom you want to share this activity. We know that once you start using Notes to My Family with your family or close friends, stories will unfold and memories will be shared. Ultimately, the information and memories will create an enduring gift to your family and loved ones.
If you are unable to download the pdf versions or you prefer a hard copy, a binder copy of the publication is available by calling Hospice Giving Foundation at 831.333.9023 or email firstname.lastname@example.org.
What is Hospice?
Hospice is a special way of caring for people who are terminally ill. Hospice care involves a team-oriented approach that addresses the medical, physical, social, emotional, and spiritual needs of the patient. Hospice also provides support to the patient’s family or caregiver. The focus of hospice is on comfort and quality of life rather than on cure. Hospice is most often provided where you live. Sometimes the hospice team will determine that you need short-term inpatient or respite care services.
It is important to understand that while Hospice provides care and can respond to patient needs 24 hours a day, the team members do not provide around the clock, in-home patient care. The Hospice team works with your caregivers to support them and help them do their job, including recommending respite as needed. Respite care is temporary care provided in a nursing home, hospice or in-patient facility, or hospital so that a family member or friend who is the patient’s caregiver can rest or take some time off.
How do I set up Hospice services?
A conversation about the need for hospice care may be initiated by the patient, the patient’s family, or the attending physician.
- Before providing care, hospice staff meets with the patient’s personal physician(s) and a hospice physician to discuss the patient’s history, current physical symptoms, and life expectancy.
- After an initial meeting with the medical team, hospice staff meets with both the patient and their family to discuss the hospice philosophy, available services, and expectations.
- In some situations, the patient and family may not have communicated end-of-life wishes. In such a case, it’s best to discuss the appropriateness of hospice care with the patient’s attending physician and then request a referral. Some doctors are uneasy about bringing up the subject of hospice care and may not want to be the first to start the conversation.
- Families or patients can begin a self-referral process through a hospice provider if the doctor is unable to discuss hospice care or if there is no attending physician available. In this example, a patient or family should contact a hospice that serves the patient’s geographic area, describe the situation, including medical history and condition, and ask for guidance.
How do I choose my hospice provider?
Depending on the availability in your region, families can choose their hospice provider. There are close to 5,000 Hospices across the US, located in every state and serving all but the most isolated communities. Its important to know who you local providers are. This link from the National Association of Home Care and Hospice allows you to search by zip code: NAHC Agency Locator Use this document to help you prepare to ask questions about what is important to you: Questions to Ask When Choosing Hospice
How long do services last?
Hospice care is for people with a life expectancy of 6 months or less (if the illness runs its normal course). However, if you live longer than 6 months, you can still get hospice care, as long as the hospice medical director or other hospice doctor re-certifies that you’re terminally ill.
About Hospice & Palliative Care
Hospice focuses on providing comfort, relieving pain, and offering support for persons with life-limiting health conditions and their families. Hospice provides pain and symptom relief, as well as emotional and spiritual support, typically in the last six months of life.
Hospice care occurs wherever a person calls home. Hospice is not a “place”; patients receive hospice care at home, which may be a person’s residence, a nursing home, an assisted living facility, or a residential hospice.
Hospice is open to people of all ages, including children. While approximately two out of three hospice patients are over the age of 65, hospice care is available at any time of life.
Hospice services are available on-call 24 hours a day, 7 days a week. In addition to regular visits from the hospice team, families can reach hospice professionals at any time to ask questions or to deal with medical and other crises.
Hospice professionals are committed to bringing pain under control as quickly as possible. Excellent pain management helps both the patients and the caregivers. It’s a cornerstone of hospice care.
Hospice staff are often present at a patient’s death and usually are closely involved as death approaches. This is one of hospice’s greatest gifts — helping the patient and his or her loved ones cope with and understand what’s happening.
The costs of hospice care are generally covered under Medicare. The Medicare Hospice Benefit covers a range of medical and supportive services that are deemed “reasonable and necessary.” Most state Medicaid programs offer hospice coverage, as do most private health insurance plans.
Palliative care is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain and stress of a serious illness, whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.
Palliative care is a team approach to care provided by specialists who work with a patient’s other doctors. It’s appropriate at any stage of a serious illness and can be provided along with curative treatment. While the core team includes doctor, nurse, and social work palliative care specialists, massage therapists, pharmacists, nutritionists, chaplains and others may also be involved.
They support the patient and family not only by controlling the patient’s symptoms, but also by helping with understanding of treatment options and goals.
A patient may receive life-prolonging therapy while receiving palliative care. By contrast, hospice care is specifically focused upon caring for the patient at the end of life.
The cost of palliative care varies based on the patient’s medical coverage. As most palliative care occurs in a professional facility, most is covered by regular medical insurance. However, as with other services, each item for palliative care will be billed separately.
To learn more about Palliative Care, visit GetPalliativeCare.org.
Planning for our later years makes a lot of sense. The practical implications of planning ahead are obvious. Being prepared can also bring emotional comfort and peace of mind during stressful times.
Hospice Giving Foundation’s general guides help you get started, organize your information, and stay on track throughout your planning process. Please note, none of the information here is a substitute for legal advice. We strongly encourage you to contact professionals who can assist you early in the process.
Starting the conversation can be difficult and knowing where to begin can be a bit overwhelming, but those who have done this planning have shared that the experience is very gratifying. At Hospice Giving Foundation we feel so strongly about advance planning that we have developed a number of tools to assist you. All are free for you to use and share with your loved ones.
We recommend beginning by reviewing the document Legal Permission and Access to Information (linked below, depending on whether the access is for you or others). With current emphasis on personal security, it can be challenging and frustrating when someone trying to help a loved one realizes they need legal permission to gain access to important information. Understanding the limitations around information sharing allows you to plan ahead.
When you are ready to fully prepare your plan and catalog your information, please download your complimentary copy of Notes to My Family.
Let’s get started! Which section applies to you?
You and / or Spouse or Legal Partner (linked to list below): The guides provided here can be beneficial when you and a spouse or partner are planning for yourselves. (a) You are planning for your end of life care and financial directives. You are capable of making plans and decisions and know how to reach out to professionals to assist you. (b) You are putting plans together for your spouse or partner who is unable to do it for him or herself. In the past you have talked about this, but now it is time to be sure legal documents are in order.
Others: Son / Daughter / Relative / Friend (linked to list below): These guides are designed to assist if you are stepping in to care for someone else, including when intervening in an emergency situation. You are taking care of someone else’s financial and health care needs (parents, sibling, close relative, friend). You are essentially handling the estate.