Resources

Final Days

The final act of your loved one’s independence is their death – and there is no way to precisely predict how or when they will die. As death nears, these things are important: safety, privacy and calm. Continue to be open and genuine so that your loved one feels secure. Your hospice team is knowledgeable, skilled and confident and they will respond rapidly when you call, so call when you need – and lean on them during this time. Now is the time to be fully present; remember that our hospice care team is there to support you every step of the way.

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What are the signs that a person is near death?

Sometimes, the patient has a surge of energy or a “rally”. When this happens, you may feel renewed hope that your loved one’s health is improving. This may be an opportunity to listen to or talk with them. Often, the “rally” doesn’t last very long. You may find that they:

• Speak with clear conversation
• Respond to questions and attentive
• Can sit up or enjoy their favorite meal

Other signs include:

• Patient may appear to be in a coma or a non-responsive state.
• Patient may no longer take in food or fluid.
• Patient may reach out, pick at clothing or have busy hands.
• The patient’s breathing patterns may come and go:

• Blowing of the lips
• Stopping and resuming of rhythmic breathing
• Congestion/rattling sound in lungs and upper throat

• Patient’s vital signs (pulse, blood pressure, respiration) may increase and decrease.
• Patient may show increased perspiration and clamminess.

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What to report to our hospice/palliative care team?

• Changes in the patient such as restlessness or anxiety, changes in breathing, pain or discomfort
• Need for spiritual support or guidance for the person or family
• Concerns that may need help from the social worker, chaplain or other members of our hospice team
• Religious, cultural or ethnic traditions important to your family
• Information about the funeral home and other arrangements that are wishes of the person, such as organ donation

It is important to talk to our hospice/palliative care team about any concerns you have. During this difficult and stressful time it is important that caregivers take care of themselves while caring for the person who is dying. The team will be there to provide support and comfort.

Grief Support

Hospice Grief and Bereavement Websites

• www.griefwords.com
• www.counselingstlouis.net 
• www.bereavedfamilies.net
• www.grief-recovery.com
• www.aarp.org/griefandloss
• www.griefnet.org
• www.dying.about.com
• www.kidsaid.com
• www.griefwatch.com
• www.bereavementcare.com

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HOSPICE

About Hospice Care

Hospice is a specially designed healthcare system that aims to provide comfort and support to patients with life-limiting illnesses and their families, when their bodies are no longer responding to cure-oriented treatments. Hospice care is provided by well-qualified and skilled health professionals of the Inter-Disciplinary Team they collectively work on patient’s care with a unique focus on patient’s needs and wants. The terminally ill patients are given the opportunity to live their end-of-life period with satisfaction and contentment that they do not need to worry anymore about themselves and their illness. Overall, hospice care can help you and your family go through the complex of social, emotional, financial, spiritual and psychological distress and let you cherish the last days of life with your families. 

However, some people often see the end-of-life care plan as giving up on hope and speeding up the end-of-life phase. But if you think practically, this is a false conception; no matter what, death has to occur with or without any hospice care. Indeed, with hospice care, you can get a more organized and well-managed system to provide proper care and support for the terminal illness, which would not be easy to create on your own. In addition, hospice care can lower your burden of medical care, and you could be able to spend your more of your precious time with your family and loved ones.

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When Should Hospice Care Start

Despite all treatments and efforts, your disease worsens day by day and can no longer be treated and cured. Then you know it is the right time to talk to your physician about hospice care. It would be best to ask your physician how much life expectancy your progressive disease condition gives you. If you are expected to live for at least six months or less than six months, you urgently need to have hospice care arranged for you. 

Other signs can also alert you for the need of hospice care, like multiple and recurring hospitalizations and emergency conditions desperately requiring the need of the hospital’s emergency room. A clear and visible collapse in health conditions even with advanced medical treatment and vital medications. Severe pain sensations inclusive of diarrhea, vomiting and low oxygen saturation leading to loss of breath. Gradual decline in performing basic daily tasks including eating, speaking, using the toilet or getting dressed. Hence, delaying hospice care would not be beneficial to you when you face such issues frequently. It’s better you take the decision yourself until it’s too late to make a decision on your own.

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What Does Hospice Care Provide

Hospice care provides you with an Inter-Disciplinary Team consisting of physicians, nurses, nursing aid, social workers, chaplains and volunteers to serve your emotional, psychological, social, spiritual and financial needs. They are going to work together to give you the most comfortable care. A hospice physician creates your care plan, supervises your medical conditions and prescribes appropriate medications. 

Nurses are on the front line; they help administer medications and follow the physician’s care plan. The certified nursing aides provide assistance to bed-ridden patients in performing routine tasks like brushing, bathing, shaving, changing, cleaning, feeding etc. They are highly useful for your family and they’re there to give you a break from these duties. Then some social workers act as advocates in solving the social, legal, financial and any other issues that you and your family come across during the end-of-life period and even after the patient’s death. Furthermore, the chaplain is responsible for maintaining your internal peace and your family’s by giving spiritual guidance and support.

Hospice care thinks about getting the most out of the end-of-life period and focuses on providing support even after you are no longer in this world to your family as loved ones cannot cope with the loss and are deeply saddened by it. There is consistent bereavement support for them for 13 months or more. 

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Is Hospice Care The Same As Palliative Care?

Generally, people consider hospice care the same as palliative care, but that’s not the case. Hospice care is only for patients suffering from life-threatening diseases and no longer wanting a curative approach. This happens when doctors have tried their best to cure the condition fully and now no other treatment is available for those patients. In such situations, it gets clear that the treatment needs to be stopped as it is producing no benefit and the patient won’t be able to survive the illness. Such patients are said to be suffering from terminal illnesses and hospice is ideal for them, bringing out the best care and support for their end of life period.

Whereas, palliative care aims to reduce pain and suffering and help with other problems caused by severe diseases or long-term illnesses. It can start at the time of the diagnosis and at the same time as the treatment. Palliative care enhances the current care and provides symptomatic treatment along with the treatment that is needed to cure the illness.

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Importance Of Hospice Care

Hospice care is a complete package of care services for patients and families for them to go through the end-of-life phase with utter satisfaction and peace of mind. It completely takes the patient’s responsibility from medications to personal care and also ensures the hygiene and cleanliness of the patient. With the help of healthcare professionals, it also provides physical, emotional, mental and spiritual comfort as well. Hospice care enables you to spend the end-of-life period with great dignity and self-respect and allows you to spend maximum time with your family and loved ones. 

Hospice care plays an important role in your advance care planning by honoring your decisions and wishes which define how you want to spend the last days of your life. It can also provide respite care so that your primary caregivers can have a small break for up to 5 days. Hence, it even reduces the medical burden that a family goes through during such phase. 

Palliative Care

What is Palliative Care?

Palliative care is a type of specialized medical care for people with severe diseases. Palliative care is aimed at improving the quality of life for people with severe diseases. It prevents or alleviates disease and treatment-related symptoms and side effects. Palliative care also addresses emotional, social, practical and spiritual issues related to an illness. When a person feels better in these areas, their quality of life improves.

A specially trained team of doctors, nurses and other specialists who cooperate with the patient’s primary care physician to provide additional support is provided for in palliative care. Palliative care focuses on the needs of the patient, not its prognosis. It is suitable for patients of all ages and at all stages of a severe illness and this type of care can be administered with curative therapy.

Palliative care can also be provided with curative treatments at the same time. Palliative care may be provided at the time of diagnosis, during treatment, during follow-up and at the time near death.

Palliative care may be offered to individuals suffering from illnesses such as:

• Cancer
• Cardiovascular disease
• Lung ailments
• Failure of the kidneys
• Dementia
• HIV/AIDS
• Multiple Sclerosis (ALS) (amyotrophic lateral sclerosis)

While receiving palliative care, patients can continue to be treated for their disease by their regular health care provider.

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What does Palliative Care Include?

A severe illness has ramifications beyond the physical state of the body. It affects every aspect of a person’s life and the lives of their family members. Palliative care can help a person cope with side effects of their illness.

Symptoms of Physical difficulties having adverse effects may include the following:

• Pain
• Sleeping difficulties
• Breathlessness
• Appetite loss and nausea

Treatments may include the following:

• Medicine
• Nutritional counselling
• Orthopedic therapy
• Counselling occupational therapy
• Integrative modalities

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Who Is Eligible for Palliative Care?

Palliative care is offered to all patients with severe disease irrespective of their age or preference for treatment. It is ideal, if provided early in the condition and continues throughout in conjunction with life-prolonging or curative treatments. In other words, patients are not required to choose between curative and palliative care; they may receive both.

Not only does palliative care improve patients’ and families’ quality of life by alleviating mental, physical distress and discomfort, but it can also help patients live longer. Improved quality of life, appropriate treatment and early hospice referral for intensive management and stabilization of symptoms are responsible for increased survival of the patient.

Pharmacy Needs, Medical Equipment, and Medical Supplies

Heart of Hope Hospice Care provides all medication and hospice medical equipment and supplies related to the patient’s hospice diagnosis at no cost to the patient or family.

Our team will coordinate the ordering, delivery, and set up of all necessary medication, hospice medical equipment and hospice supplies. This allows the patient and their family to focus on their time together instead of worrying about financial concerns or leaving their terminally ill loved one alone to make trips to the pharmacy or medical supply stores. We know your time together is precious.

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Hospice medical equipment may include (but is not limited to): 

• bedside commodes
• geriatric recliners (geri chairs)
• hospital beds
• nebulizers
• overbed tables
• oxygen
• shower chairs
• wheelchairs

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Hospice medical supplies may include (but is not limited to): 

• bandages and other wound care supplies
• briefs, pads, and other continence care supplies
• gloves
• oxygen tubing and other oxygen supplies
• personal care products including soap, shampoo, body lotion and barrier creams.
• positioning devices including cushions and wedges
• adult wet wipes

Having the proper medical equipment in good working condition and the medical supplies required allows patients to receive care in the location of their choice. Our team will provide expert instruction and education to the patient and their caregivers on the proper use of all hospice medical equipment and supplies. In addition, trained Heart of Hope Hospice staff are available to provide support and answer questions about the use of the hospice equipment and supplies 24 hours a day, 7 days a week.

Medicare, Medicaid, and most individual insurance companies cover 100% of hospice medical equipment and supplies related to a hospice patient’s terminal diagnosis. Our team will work directly with these organizations to coordinate this benefit.

Hospice Eligibility Criteria

In order to begin hospice care, patients must meet the hospice eligibility requirements established by the U.S. Centers for Medicare & Medicaid Services. While no specific number of symptoms is required when qualifying for hospice, these guidelines can help determine if a patient’s condition is, or will soon be, appropriate for hospice care.

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Hospice eligibility requirements:

• Patient has been diagnosed with a life-limiting condition with a prognosis of six months or less if their disease runs its normal course
• Frequent hospitalizations in the past six months
• Progressive weight loss (taking into consideration edema weight)
• Increasing weakness, fatigue, and somnolence
• A change in cognitive and functional abilities
• Compromised Activities of Daily Living (ADLs) such as eating, bathing, dressing, toileting, transferring/walking, and continence
• Deteriorating mental abilities
• Recurrent Infections
• Skin breakdown
• Specific decline in condition

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Disease-specific hospice eligibility criteria.

There are also specific hospice eligibility criteria to consider based on the patient’s primary diagnosis. Choosing from the list of diseases below will let you read the applicable requirements for hospice care.

Bereavement Program

Heart of Hope Hospice provides an organized bereavement program supervised by a qualified bereavement coordinator. Heart of Hope Hospice offers unlimited bereavement support and services to all of our patient’s families, caregivers, loved ones, and community members. Bereavement support starts at the time of patient admission and is offered for at least 13 months following the time of death. However, bereavement support can last as long as someone needs it; we do not limit the time or amount of support offered. We assess bereavement needs and risk levels to develop individualized plans of care for all individuals who request bereavement services. The support and services we offer include, but are not limited to: phone calls, visits, grief-related education, mailings, support groups, memorial services, and outside referrals to appropriate agencies.

Medical Social Services and Spiritual Services

Medical Social Services

Heart of Hope Hospice has a professional care team that provides the Medical, Spiritual, and Bereavement counseling needed for the patient and their family. We assist you with many of the tasks that seem difficult during this time. We help the patient and family in coming to terms with dying. We assist with tasks to make end of life treatment less complicated.

It is certainly a delicate and difficult period for a family to deal with a terminal illness. We assist with organization, coordination, and implementation of necessary paperwork, as well as daily medical coordination, including the Medicare Hospice Benefit and private insurance forms. Our Medical Social Worker provides emotional support to the patient, family and staff, and provides ongoing education and assistance with available Heart of Hope Hospice services. The Medical Social Worker will make an initial visit to a new hospice patient within 5 days of admission and will continue to make visits on a monthly basis.

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The Medical Social Worker will discuss and assist with:

• Advanced Directives including Living Wills, Power of Attorney (POA), and Do-Not-Resuscitate (DNR) orders
• Determining care options, including respite care, handling coordination with the family and care facility
• Coordinate placement into a personal care home or nursing facility if higher levels of care are needed
• Serves as intermediary between hospice clinical team and bereavement staff
• Provide information and support to determine what is right for the patient; puts family in touch with private duty care, Agency on Aging services, funeral homes and services, VA benefits, and determining insurance/financial assistance 

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Spiritual Services

Heart of Hope Hospice offers pastoral and bereavement care for both routine and emergency purposes. The Pastoral Care team at Heart of Hope Hospice is comprised of ordained ministers with various religious affiliations. In keeping with the Hospice philosophy, the goal of the Pastoral Care team is to provide an interfaith forum where spiritual needs of the individual come first, not the denomination. Patients and their families will be relieved knowing Heart of Hope Hospice provides spiritual services during their entire journey.

This spiritual support team can also assist with funeral arrangements and conducting memorial services.

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About Our Ministers

• Available to provide a listening ear when you are worried, afraid, or just need to talk
• Address spiritual concerns you may have
• Will join you in prayer, read scripture, or just sit quietly
• Provide or arrange for religious sacraments or other religious rites
• Conduct funeral and/or memorial services

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