Hospice care is for people who are nearing the end of life. The services are provided by a team of health care professionals who maximize comfort for a person who is terminally ill by reducing pain and addressing physical, psychological, social and spiritual needs. To help families and caregivers, hospice care also provides counseling, respite care, and practical support.

Unlike other medical care, the focus of hospice care isn't to cure the underlying disease. The goal is to support the highest quality of life possible for the patient and family for whatever time remains. Bereavement support is also a central goal. Caregivers and other loved ones need support during and after the hospice process.

Resources:

Frequently Asked Questions About Hospice Care

Palliative care is whole-person and family-centered care that relieves symptoms of a disease or disorder, whether or not it can be cured. Hospice is a specific type of palliative care for people who likely have six months or less to live. Hospice care is always palliative care, but not all palliative care is hospice care.

Both palliative care and hospice care seek to improve the quality of life for both the patient and family. But palliative care can begin at diagnosis and continue along with treatment. Hospice care begins after treatment of the disease is stopped, and when it is clear that the person is not going to survive the illness.

Resources:

Some Differences Between Hospice Care and Palliative Care - NIH
Palliative Care and Hospice Care Handout - CaringInfo
Palliative and Hospice Care: What’s the Difference

• A 2015 review study reported that patients who received hospice care had greater satisfaction and superior symptom control compared with those who did not receive hospice care. In addition, hospice care might be associated with longer survival compared with “aggressive” care outside of a hospice. Some hospice recipients even experience an improvement in their condition, resulting in “graduating” from hospice services.
• A 2016 study published in the Journal of the American Medical Association indicates a better end-of-life experience for cancer patients who died with the support of hospice as compared with a hospital's intensive care department. In addition, when hospice care was provided for more than three days, families reported a better end-of-life experience than those patients who received hospice care for three days or less. Further, family members of patients who did not receive hospice care, or who received three days or less, indicated that their loved one was less likely to have died in the patient's preferred location (i.e. 40% passed away in their preferred location versus 73% of those who had more than three days of hospice care). "In this study we found that patients' preferences influenced the care that they received.”

• Enjoy time with the people they love and who love them.
• Reconnect with a loved one from whom the patient has been estranged and heal emotional wounds.
• Visit favorite places or those with special meaning, such as a school, house, or location with a beautiful view.
• Put financial affairs in order.
• Reflect on life.
• Create a legacy gift, such as a journal, artwork, or a videotaped message.

Resources:

Make a plan to live well – Palliative Doctors

Hospice care is for a terminally ill person who is expected to have six months or less to live. But hospice care can be provided for as long as the person's doctor and hospice care team certify that the condition remains life-limiting. Many people who receive hospice care have cancer, while others have heart disease, dementia, kidney failure or chronic obstructive pulmonary disease.

Enrolling in hospice care early helps you live better and live longer. Hospice care decreases the burden on family, decreases the family's likelihood of having complicated grief, and prepares family members for their loved one's death.

So how do you know when it's time for hospice care? Requesting hospice care is a personal decision, but it's important to understand that at a certain point, doing "everything possible" may no longer be helping you. Sometimes the burdens of a treatment outweigh the benefits. Hospice care will help you continue treatments that are maintaining or improving your quality of life. If your illness improves, you can leave hospice care at any time and return if and when you choose.

• The following are some signs that you or a loved one may experience a better quality of life with hospice care:
• The patient has had several trips to the emergency room, and while his/her condition was stabilized, it continues to worsen.
• The patient wishes to remain at home rather than spend time in the hospital.
• The patient is no longer receiving treatments to cure his/her disease.
• Difficulty managing pain;
• Difficulty swallowing and/or a decrease in appetite and/or weight loss;
• Decrease in comprehension and/or increased disorientation or confusion;
• Increased need for assistance with activities of daily living;
• Increased incontinence;
• Recurrent infections;
• Wounds not healing properly;
• Increased edema;
• Increased shortness of breath;
• Decrease in smiling and communication; withdrawal from family and friends.

Research has shown that people would prefer to die in comfortable or familiar surroundings rather than in an institutional setting. Hospice will come to the patient wherever he or she calls home.

Most hospice care is provided at home — with a family member typically serving as the primary caregiver. However, hospice care is also available at hospitals, nursing homes, assisted living facilities, and dedicated hospice facilities.

No matter where hospice care is provided, sometimes it's necessary for the patient to be admitted to a hospital. For instance, if a symptom can't be managed by the hospice care team in a home setting, a hospital stay might be needed.

If you're not receiving hospice care at a dedicated facility, hospice staff will make regular visits to your home or other setting. In many cases, family members or loved ones are the patient’s primary care givers.
Hospice staff is on call 24 hours a day, seven days a week.

A hospice care team typically includes:

• Doctors.
  A primary care doctor and a hospice doctor or medical director will oversee care. Each patient chooses a primary doctor. This can be your prior doctor or a hospice doctor.
• Nurses.
  Nurses will come to your or your relative's home or other setting to provide care. They are also responsible for coordination of the hospice care team.
• Home health aides.
  Home health aides can provide extra support for routine care, such as dressing, bathing, and eating.
• Spiritual counselors.
  Chaplains, priests, lay ministers or other spiritual counselors can provide spiritual care and guidance for the entire family.
• Social workers.
  Social workers provide counseling and support. They can also provide referrals to other support systems.
• Pharmacists.
  Pharmacists provide medication oversight and suggestions regarding the most effective ways to relieve symptoms.
• Volunteers.
  Trained volunteers offer a variety of services, including providing company or respite for caregivers and helping with transportation or other practical needs.
• Other professionals.
  Speech, physical and occupational therapists can provide therapy, if needed.
• Bereavement counselors.
  Trained bereavement counselors offer support and guidance after the death of a loved one in hospice.

Hospice providers will assist the patient and the family to develop an individualized care plan. Hospice focuses on the patient as a whole person—not just the part that is sick. They understand that there is not always one right or wrong answer and that the patient’s needs and wishes may change over time.

Based upon individual and family needs and preferences, hospice care can provide the following:

• Medications, medical supplies, and equipment;
• Expertise in pain management and symptom control;
• Help with the patient’s personal care and hygiene;
• Emotional, social, and spiritual support;
• Education for loved ones on how to care for the patient;
• Short-term inpatient care when pain or symptoms become too difficult to manage at home, or the caregiver needs respite time;
• Special services like speech and physical therapy, if needed;
• Respite care for the caregiver,
• Completion of household chores, giving loved ones a chance to run errands, go out to dinner, take a walk, or nap.
• Bereavement support to surviving loved ones and friends for at least a year.

Medicare, Medicaid, the Department of Veterans Affairs, and private insurance typically pay for hospice care. You must choose a Medicare-approved hospice provider that is able to accept Medicare payments. Ask about payment information before choosing a hospice program.

Once your hospice benefit starts, Medicare will not cover the following:

• Treatment intended to cure your terminal illness and/or related conditions.
  Talk with your doctor if you're thinking about getting treatment to cure your illness. As a hospice patient, you always have the right to stop hospice care at any time.
• Prescription drugs to cure your illness (rather than for symptom control or pain relief).
• Care from any hospice provider that wasn't set up by the hospice medical team.
  You must get hospice care from the hospice provider you chose. All care that you get for your terminal illness must be given by or arranged by the hospice team. You can't get the same type of hospice care from a different hospice, unless you change your hospice provider. However, you can still see your regular doctor or nurse practitioner if you've chosen him or her to be the attending medical professional who helps supervise your hospice care.
• Room and board.
  Medicare doesn't cover room and board if you get hospice care in your home or if you live in a nursing home or a hospice inpatient facility. If the hospice team determines that you need short-term inpatient or respite care services that they arrange, Medicare will cover your stay in the facility. You may have to pay a small copayment for the respite stay.
• Care you receive in an emergency room, care you receive as a hospital inpatient, or ambulance transportation, unless it's either arranged by your hospice team or is unrelated to your terminal illness and related conditions.
  
  

Resources:

Medicare and Hospice Benefits Brochure – CMS
Medicare and Hospice Care – Medicare.gov

“I wish we had been referred to hospice sooner.” It’s a sentiment that recurs in patient/family surveys returned to hospices each year. Unfortunately, most people don't receive hospice care until the final weeks or even days of life, possibly missing out on months of quality time. This may be out of fear that choosing hospice means “giving up.” Sometimes doctors fear that their patients will feel abandoned if they suggest hospice.

Experts in hospice care agree that patients need to be enrolled for at least 60 days to take full advantage of a hospice program. Sadly, while hospice care is most effective over a period of months, the 2018 National Hospice and Palliative Care Organization Report indicated that nearly 28% of Medicare hospice recipients received services for seven days or less. Here are some of the benefits of timely referral to hospice:

• The patient can participate in all planning and decisions, before the stress of a medical crisis. Early discussions about hospice can facilitate open communication and provide patients and their family members a choice and sense of control.
• Patients and family benefit from sustained relationships with the hospice team. They have time to develop personal and professional rapport with staff and volunteers, discuss end-of-life goals and create an optimal plan of care designed around patient and family wishes.
• Pain and symptoms are addressed sooner, and crises can be avoided.
• Hospitalizations can be reduced or eliminated.
• Advance directives can be prepared to avoid difficult decisions later.
• Hospice services can help a patient and family spend peaceful time together. It offers a comforting alternative when a cure is no longer possible.
• Hospice can eliminate unnecessary calls to 911 and trips to the emergency room by giving families the means to care for their loved one at home and the knowledge of what to expect at the end of life.

Anyone can inquire about hospice services. You or your loved one may call a local hospice provider and request services. The hospice staff will then contact your physician to determine if a referral to hospice is appropriate. Another way to inquire about hospice is to talk with your physician, and he or she can make a referral to hospice.

There are a number of hospice providers serving Putnam County. While they have many things in common, each provider is also unique. It is important to find out about the services that each hospice offers.
You can also talk to people you trust who work in healthcare or aging services or who have received support from a hospice.

Resources:

PCHPCA Choosing a Hospice Questionnaire
Hospice Providers Serving Putnam County Jan 2023 - PCHPCA
Choosing a Hospice Provider Worksheet – CaringInfo
How to Choose a Hospice – Indiana Hospice and Palliative Care Organization
Choosing a Hospice: 17 Questions to Ask – Hospice Foundation of America

The Putnam County Hospice and Palliative Care Association (PCHPCA) is seeking to offer a high-quality educational video library for use by healthcare professionals and the general public. 

Please click on the links below to view the video presentations.

Presented by: Brian Black, D.O.
Family Physician, Greencastle Family Health (Hendricks)
Medical Director – Elara Caring Hospice

Produced by PCHCPA Board Member Laury Wallace, NP-C, AGPCNP. ACHPN, CPP ELDCS
Owner/Nurse Practitioner
Life's Journey Home Hospice & Inpatient Hospice Facility

Presented by: Brian H. Black D.O., FAAFP, HMDC