Does Hospice Mean Death?
If one were to take a survey of this question; the survey may show the reader that the minute one hears the word hospice, hospice care, or life limiting illness that the next word that comes to mind is death. However, what an absolute misconception for so many when faced with the decisions of end-of-life care. Hospice agencies all over the country face this stigma associated with this one word-hospice. The answer to this question: Does hospice mean death. is a resounding NO! Hospice does not mean death. Death can be and is many times the end of the journey for many while using hospice care. However, hospice is comfort and dignity. Hospice is an interdisciplinary team that provides comprehensive, medical, social, emotional, and spiritual care to those nearing the end of life. Hospice is a journey that is taken by a patient who is no longer eligible for curative care with a life limiting illness. Hospice services allow a person/family to take that end-of-life journey with the help of nurses, doctors, social workers, chaplains, and health aides using comfort and dignity. Hospice is a term for end-of-life care that results in the individual and family living with quality of life until the end of life. Hospice does not hasten death. Hospice is not death. Hospice is nothing but support, love, and care until the end.
What are the 4 levels of Hospice care?
1. Routine Care is by far the most common level of care that patients qualify for. It is intended to provide care for an individual whose plan of care is effective in managing symptoms and is seen by a nurse and health aide on a pre-scheduled visit routine.
2. Continuous Home Care is required when a patient’s symptoms are not controlled by the plan of care and a nurse is scheduled to stay at the patient’s bedside due to fluctuating symptom management. Once it is felt that the individual has been able to be made comfortable and the plan of care is updated and effective, visits would then return to the level of Routine Home Care.
3. Inpatient Hospice Care is for patients who are critically ill and do not have an effective plan of care, this patient may qualify for inpatient care. If for example, your loved one has been hospitalized and it is felt that it would not be safe to transport due to an imminent status to a home or facility location, one may hear the suggestion of Inpatient Hospice Care. Hospice care would be provided in the hospital. If your loved one would become stable for transportation, discharge planning can then occur. This level of care is seen in the most medically complex individuals that are actively transitioning (dying).
4. Inpatient Respite care is the final level of care. For individuals who are caring for their loved one’s in a private residential setting, families may opt for Respite Care to be able to take a break from being the primary caregiver which can be quite exhausting. In this scenario, Medicare allows an individual up to 5 days in an inpatient Skilled Nursing Facility with round the clock care. This provides an opportunity for the primary caregiver to get some much deserved rest. Please feel free to contact Angels Grace Hospice for more information what level of care is right for your loved one.
Can a patient get better while receiving hospice care?
While the goals of hospice care are to provide comfort, respect, and dignity to an individual with a life limiting diagnosis, often one can see an improvement in quality of life. In some cases, with the extra care some individuals will “perk up” because of the extra visits and increased communication between patients, facility staff, and families. While it is not a guarantee a dramatic change is observed, one thing is for certain; your loved one will get the extra TLC he/she deserves with the goal to maximize the most pleasure, comfort, and dignity for your loved one.
Does Hospice Cover 24-Hour Care at Home?
Often, families have the desire to care for their loved ones in the home setting, but are surprised that they are the primary caregivers in this scenario. The hospice team is available to support the primary caregiver through guidance, education, and expert assessment skills. By no means does this mean the caregiver is alone in giving the care their loved one needs, but it is the role of the caretaker to understand they are an active key role in keeping their loved one comfortable at home. Often families will elect to find a part time or full time caregiver to provide extra support and relief from the exhausting role of being a caregiver. As discussed, this may pose to be a challenge for those who are financially challenged by this additional cost. Often, families will pool their resources to effectively provide this care.
For example, some families will create a schedule to safely provide care while giving the primary caregiver a breather, so to speak. It is important to note that Medicare does cover a certain amount of relief for the caregiver called Respite Care. Respite care is designed to allow the patient to be transferred to a SNF for up to five days in order to provide some relief. The cost of Respite care is covered under the Medicare Hospice benefit. It allows a safety net for the primary caregiver who may need to go out of town, if they themselves need to tend to medical issues of their own, or they simply experience caregiver fatigue. Always remember, you are not alone- you have a team of experts supporting you and your family!
Can I still receive hospice services without insurance?
In most cases, your insurance company will pay hospice directly; However, not all insurance plans provide full coverage for hospice care and some hospice services may not be covered under your plan. At Angels Grace Hospice, we receive our reimbursement from Medicare, Medicaid and private health insurance for services. All third-party payers are billed for hospice services as appropriate.
All patients, who meet the requirements, are accepted regardless of ability to pay. Medicare or Medicaid patients will not be refused care or have their hospice care discontinued or reduced due to their ability to pay for that care. Our social workers will meet with a patient/family to determine concerns and needs.
If you are in original Medicare (fee for service) Beneficiary and we believe Medicare may not pay for an item or service that Medicare usually covers, you or your authorized representative will be issued and asked to sign and date an advance beneficiary notice prior to receiving our service.
Is there a fee for a hospice consultation?
The answer is no. In order for our team to be able to complete an evaluation of an individual, we simply would need an order from a doctor stating “hospice evaluation and treat”. This allows the nurse to complete both a physical and chart review of the person considering hospice care. At no point are families under any obligation to have the evaluation completed. We also can provide an informational consultation that does not require a physician’s order, but the nurse would not have access to an patient’s medical chart that is necessary to complete a full evaluation. In either instance, there are no fees to have this performed. We are always happy to answer any questions about hospice so that one can make an informed decision about a loved one’s care. At Angels Grace Hospice, we are here to serve you!
What’s the first step to getting started with hospice care?
Anyone, the patient, family, nurse, or doctor can make the initial call for hospice, although a medical doctor or nurse practitioner must give the order to evaluate and to treat.
Gathering and obtaining information is step one. For the purpose of this blog, we will discuss as if this is your conversation, rather than a medical professional, regarding hospice care. If you call Angels Grace Hospice, you will speak to someone in our referral department or one of our knowledgeable staff regarding, “Why hospice now?” This is a heartfelt conversation with you or your loved one, to help you determine if hospice is the best choice for you at this time. Angels Grace Hospice also has a palliative care program that may possibly better meet your needs.
Medicare requirements for hospice care, as with most insurance companies, are:
-The patient has chosen comfort care rather than curative,
-The patient must have 2 MD’s agree, if the disease follows it’s normal course, there is a prognosis of 6 months or less
-The patient understands and agree to the plan of care
Our staff will help define care goals. We will ask about:
– The disease process
– What treatments have been administered had
– About the decision to not pursue curative treatment any longer
Angels Grace Hospice staff will explain the hospice program such as:
– The hospice benefit is covered by Medicare, Medicaid or most private insurance. There are no out of pocket costs to you for hospice care at Angels Grace Hospice.
– Should the conversation lead to a decision that hospice care is what is best, Angels Grace Hospice will ask the patient or representative to contact the physician for the order to evaluate and treat if appropriate. Once Angels Grace obtains the MD order, hospice care can begin. These conversations can be emotional, the patient and the family are likely to feel like they are getting back control after months of treatment.
The conversations will be:
– Led by the patient and their willingness to share
– Will be with staff who want the best for the patient, not just to “sell” hospice
– During the initial call, Angels Grace Hospice will review who is on the hospice team and the role they provide. The team includes a registered nurse to evaluate and begin the start of care after developing a plan with the doctor and the hospice medical director. The registered nurse will help develop a plan of:
– How often to visit, based on medical needs
– What equipment and supplies are needed to keep the patient safe and comfortable
– What medications to continue or add to the care plan to keep the patient as pain and symptom free as possible.
All of this is a plan built with the patient’s goals and approved by the doctor and the hospice Medical Director.
Part of the education received regarding hospice care, is who else is on the hospice team. Angels Grace Hospice employs dynamic caring disciplines including, Social Workers, Chaplains, Certified Nurse Assistants, volunteers and ancillary services of pet therapy and reflexology.
How do you know which hospice to choose?
Many of our referrals come from word of mouth, calls to say “ You took care of my neighbor and they loved you, I see your staff in the facility and they are so caring.” Another way to compare hospices is to access the Medicare.gov site and find Hospice Compare.
At Hospice Compare, they provide hospices in your area with rankings that are determined by the feedback of families after hospice care. Angels Grace Hospice is one of the highest locally rated hospices in the area. Recognition we strive to achieve, maintain and excel.
Who is on the Hospice Team?
Medicare recognized the value of hospice and passed the hospice benefit in September of 1982. Most people say they want to die at home (be it their home, home with relatives, at assisted living or a skilled facility) not in a hospital hooked up to machines. Hospice is a philosophy of care not a place. Medicare regulates hospice very closely and determined in 1982, what disciplines must be on the hospice team. Medicare also developed guidelines for admission, requiring two (2) physicians to state that the patient has a prognosis of 6 months or less and is electing comfort rather than curative care. Hospice care recognizes the dying process as a normal life event. Angels Grace Hospice provides aggressive interventions for comfort rather than cure. Care can begin when a patient decides they no longer wish to pursue curative treatment or the primary MD says there are no other treatments available for cure and gives an order for hospice care. An interdisciplinary team (IDT) helps to ensure that all care is for the patient and family as a unit of care, not just the patient. The journey involves not only the patient, but the supporting family. The patient, if able, drives the care plan, helping all disciplines to help set goals of care. The family can reach out to the whole team to provide education and support during their loved one’s journey. Hospice treats the patient (and family) not the disease. The focus is on CARE not Cure. Many in hospice say hospice brought control back to us when everything seemed to be spinning out of control.
– A Medical Director
– A Primary Care Physician
– A Registered Nurse
– A Social Worker
– A Chaplain
– A Nurse Assistant
– Bereavement Counselors
We can provide services of a Speech Therapist, Physical Therapist, Occupational Therapist and Dietician, should your plan of care require those disciplines. At Angels Grace Hospice care, we have added complementary therapies beyond what Medicare requires; we also have reflexologists and pet therapy. We have a team of trained professionals that have chosen this specialty (Hospice Care) to be their life’s work… most say their calling.
A Medical Director Certified in Palliative and Hospice Medicine. We also have an assistant medical director who has many years as a private practitioner, as well as physicians who can help support patients who do not have their own MD. The Medical Director is responsible for oversight of all clinical matters. Angels Grace Hospice values education and each Interdisciplinary team meeting (IDT) leaves time for education that the Medical Directors provide. Angels Grace Hospice Medical Directors collaborate with attending physicians, consult on pain and symptom management and the palliation of symptoms related to your hospice diagnosis.
The Registered Nurse will most likely be your first contact with hospice. S/he will help to develop a plan of care (with you as the driver) that focuses on the issues that are concerning to you. The RN will also assess pain and symptom management, educate on medications and other ways to manage symptoms without medications, ( such as a fan blowing on your face for Shortness of Breath.) The nurse will educate on disease process, ways to cope, equipment or supplies that might be needed and will order those for you. S/he will help with hard discussion surrounding end of life issues as well as how to support you and your family. The RN is the eyes and ears for the Medical Director and Attending Physician, works closely with the medical director to help manage your symptoms. At Angels Grace Hospice care, it is our sincere desire to anticipate end of life issues and help you prepare for them so you and your family feel educated and prepared for anything that might arise. It is our desire in hospice care to be a resource and support for all of the changes you are going through. A trained hospice nurse is available 24/7 to support over the phone or with an emergent visit if needed. Some of the best compliments ever received…we couldn’t have done this without Angels Grace Hospice care, I never expected to have so many laughs with my hospice nurse, I thought they would be gloom and doom people, they became like one of the family.
Masters prepared Social Workers who have chosen end of life care for their careers. Our Social Workers provide emotional support, counseling and guidance to the patient and family in coping with stress related to the illness and changes that may bring. Social workers strive to identify a need before it becomes a crisis. Angels Grace Hospice Social Workers provide resources for extra care giving, nursing home placement if needed, respite care, final arrangements and truly a friendly, safe ear during stressful times.
Masters prepared non-denominational Chaplains. Our hospice care chaplains are available for crisis care, conducting funerals and memorial services or reaching out to patient’s own clergy for support. Angels Grace Hospice chaplains will pray with/for you IF you desire, are versed on many religions and cultures and have a high respect for the patient’s and family personal faith and beliefs…or will help you remember what brings you joy or peace… the place or thing that is spiritual ( although maybe not religious) in you. They can come as a friendly visitor, play music for you if that gives you joy or can talk about fears you might have or fears your family has with the changes end of life might bring. Rote sayings (like prayers) and music are often the remaining pearls of dementia patients. Our chaplains will often share that a patient with dementia, who really hasn’t talked for quite a while, was reciting a prayer or singing a hymn, this is a gift for the families to see or hear. Chaplains often bring down the tone of a family in distress, helping all to feel calmer as needs are voiced and met.
Certified nurse assistants providing for personal care. Our CNA’s work under the supervision of our registered nurses and provide scheduled, intermittent personal care. Angels Grace Hospice CNAs are the cream of the crop, carefully chosen not only for skills they provide, but for desire to provide excellent care. They will help to make you feel like your “old self” shampooed, hair combed even curled sometimes, shaved, polished nails, clean linens. They will help teach your family or caregivers how to provide safe care also, so when the Angels Grace CNA is gone, your family will feel confident in their ability to care for you. They will report changes of condition to the RN. CNA’s are not allowed to dispense medications under Illinois law, but will alert the appropriate person if you are in need of medication. The best compliment I know is when a family comes to visit and says I know the hospice aid was here, our loved one looks so fresh, smells so good and the sheets are folded just so.
Bereavement Coordinator is specially trained to follow your loved ones after you are gone. Knowing someone is checking can be a great relief for our patients. If you or a family member are struggling/fearful with the idea of end of life our SW, Chaplain or Bereavement Coordinator can be involved before death.
Volunteers! What can you say about someone who takes their special, precious time to help others? Volunteers are such a vital part of hospice. Angels Grace Hospice volunteers are well trained and supervised by our Volunteer Coordinator; they work closely with our hospice team members. These lovely souls provide Angels Grace Hospice with many types of support. They provide friendly visits to our patients, play music, read books, play checkers, attend bingo, have taken a patient to the mall, have worked in a garden for a patient while they sat outside enjoying the flowers they used to tend, have sat with a patient while the caregiver went to MD. They cannot provide personal care, but can certainly provide relief for a caregiver while they walk around the block or run to the store. They are good listeners, non-judgmental, adaptable and have a strong desire to reach out with love and concern for others. Truly the heart of hospice!
What is the difference between Palliative Care and Hospice Care?
Palliative Care (PC) is often misunderstood, and compared or confused with Hospice Care. The common misconception; you have to be dying to receive the benefits of Palliative Care.
Palliative Care differs from Hospice Care in many ways. First of all, PC is not Hospice Care, but Hospice Care always includes Palliative Care. Confusing, I know – allow me to clarify.
Palliative Care is considered care for the living; focusing on the whole person. It is available early in the disease process, whether a chronic illness (that may or may not be terminal), or with an acute event. Palliative Care can be provided along with other curative / maintenance therapies. It is considered an extra layer of care, in addition to everything the person has in place already, ie; chemo/radiation, PT/OT, surgery etc. Palliative Care does not replace the person’s medical team, but rather works in collaboration along with their team to provide an extra layer of support. Numerous studies show that people with serious illness and their loved ones live longer and better with PC. Palliative Care is a distinct medical specialty that helps seriously ill people live as well as possible, for as long as possible. It makes a difference in the lives of individuals and their loved ones, by providing support, guidance and by listening to them – helping through their own personal journey.
The focus of Palliative Care is on quality of life and management of symptoms, helping to relieve pain, stress, along with providing support to individuals and families. It addresses the physical, emotional and spiritual aspects of serious illness. PC helps people identify their goals and wishes with respect to care. Our patients are experts about themselves; we are experts at helping them clarify their goals. These conversations are often the first time a person realizes the seriousness of their situation and illness. PC can provide the comfort they need at this time.
Where Hospice Care is considered end of life care (looking at someone as though they might have 6 months or less to live), Palliative Care is so much more. PC follows through all stages of a serious illness, focusing on enhancing quality of life by focusing on what the patient CAN do, not what they can no longer do. There is no limit as to the length of time a person can be followed by and cared for on Palliative Care.
Angels Grace Palliative Care’s agenda is to really hear what patients and families consider most important, by asking “what is your definition of quality of life, what are your goals”. Angels Grace Palliative Care is also about supporting patients and families through periods of change and potential decline. Conversations are centered around what is important to them, right then and there. They are supported through difficult decisions and trust is then developed. In the event that they progress into Hospice Care; that transition is seamless – they are prepared and feel supported and empowered in their decision. Palliative Care “walks that walk” with them.
“What has surprised me is how little Palliative Care has to do with the death. The death part is almost irrelevant. Our focus isn’t on dying, our focus is on quality of life”.
~Dr. Balfour Mount, pioneer of the Palliative Care movement
This describes Angels Grace Palliative Care. The beauty and essence of Palliative Care is that it is whole person care; respecting the patient for who they are, and how they see themselves – while supporting them and their loved ones. When going through a serious illness, or identifying goals and wishes for care, everyone can use more support – no matter where that journey leads. Angels Grace Palliative Care is dedicated to helping individuals and loved ones weigh options carefully and objectively, helping to choose treatments wisely, and of course helping them to live as well as possible, for as long as possible. Palliative Care is truly the healthcare team they didn’t know they had; they might not understand it – but after learning about it, they know they want it.
It is the greatest privilege to be a part of their journey, no matter where it leads.