When you should make the call to a hospice professional

It’s an unfortunate fact of life that despite the best efforts of modern medicine, there will come a time when curative treatments will no longer be effective. Continuing futile treatments can actually do more harm than good by increasing the patient’s pain and discomfort, providing false hope to the patient and their family, and delaying the start of comfort measures that can improve the patient’s quality of life.

In order to know when the time for hospice has arrived, it is important to understand the anticipated disease progression and possible symptoms, complications and side effects if the patient’s illness runs the normal course of expectations. This document provides thorough information on how to know when it is time to consider hospice. For information on specific disease progressions, please see page 8.

When you should make the call to a hospice professional.

888-564-3405 • CrossroadsHospice.com 1

Quick take:Why you should contact a hospice professional early.

If you believe your loved one may need or soon need hospice, it is important to speak with a hospice professional about their condition as soon as possible. Family caregivers often do not realize that their loved one may already be eligible to receive all the benefits and support of hospice care.

It can be difficult for family members to know when their loved one becomes hospice eligible, so it is important to speak with a hospice professional when your loved one has been experiencing a decline or has been diagnosed with a life-limiting illness. This will allow trained professionals to assess the situation and help you to begin planning for the future.

A hospice professional can assess the situation and provide information and guidance on the hospice admission process, including what support is available to the patient, how to tell if the patient is appropriate for hospice care and when to initiate that process.

Once a patient begins hospice service, the hospice care team will ensure that the patient has the medications, supplies, and equipment related to and necessary to treat the symptoms of the terminal illness. Care is typically provided wherever the patient resides, such as their home, a nursing home, or an assisted living facility.

It can be difficult for family

members to know when their

loved one becomes hospice

eligible, so it is important to

speak with a hospice professional

when your loved one has been

experiencing a decline or has

been diagnosed with a life-

limiting illness. This will allow

trained professionals to assess

the situation and help you begin

planning for the future.

To make a hospice referral, please call us at 888-564-3405. Our team will schedule a convenient time and place to meet with the patient, family and/or significant other.

We will also assess the patient and work with their physician to obtain a hospice and palliative care order. A hospice evaluation and admission can be done at the same time.


When is it time to call a hospice professional?

When a loved one has a terminal illness, every moment counts. Speaking with a hospice professional early in the process allows you to have all your questions answered long before a crisis hits. Caring for a terminally ill loved one in your home can be incredibly rewarding, but it is also physically and emotionally draining. Crossroads Hospice & Palliative Care supplements the care provided in the home with a team of highly trained nurses, aides, social workers, chaplains, volunteers and bereavement specialists to ensure that the patient and their family receive all the physical, emotional and spiritual support they need during this very difficult time.

Quality of life matters most.When curative treatments are no longer working, the focus rightfully shifts to comfort and quality of life. Hospice care manages the patient’s symptoms and pain as well as works with the family so they can make the most of the time with each other. Without expert eyes in the home to spot early signs of discomfort, a patient may experience more pain and take longer to have their symptoms managed.

Hospice professionals are experts in pain management, and they have a wide range of tools available to treat each patient’s symptoms. In addition to managing a patient’s physical pain, our team is trained to recognize and treat emotional and spiritual pain at end of life. Untreated emotional pain and spiritual pain including anxiety and terminal restlessness can create additional distress for the patient and their family.

Respite care.If needed and approved, a team of hospice professionals will offer treatment options such as respite care, which is designed to provide caregivers some time to relax and rest as a much-needed break from caregiving. This break will allow the caregiver to focus on the quality of time with their loved one.

Why you should not wait to call a hospice professional.Simply put: hospice makes the time that’s left better. For the patient and for the loved ones and caregivers.

Too often families wait until a patient’s final week of life before calling a hospice professional. But, patients are eligible for hospice care when they have been diagnosed with six months or less to live if their illness runs its typical course.

When families delay, this often means months of ER visits and hospital admissions, along with additional pain and symptoms that could be managed by their hospice care team, allowing them to live more comfortably.

In other words: once curative treatment ceases, the best thing for a patient to do is start hospice care. It is not a death sentence – it is a way to make the last few months of life better.


What services does hospice provide?

Medical staff When a patient begins hospice care, they will be introduced to a team of trained hospice professionals, each responsible for a different aspect of the patient’s care and quality of life.

Nurses Under the direction of a hospice medical director, nurses will visit to assess the patient’s condition and provide necessary nursing care. Nurses provide an extra set of trained eyes to ensure that symptoms are being managed appropriately.

Aides Personal care including bathing, grooming, dressing and turning the patient will be addressed by hospice aides. Aides visit frequently to ensure the patient’s personal care needs are met and patients often develop a close bond with their hospice aide.

Social workers Social workers can help families navigate their unique family dynamics during this difficult time, in addition to assisting the family in making funeral arrangements, and can connect the family to additional local resources.

Chaplains, volunteers and bereavement coordinators

Chaplains provide emotional and spiritual guidance, volunteers make visits to lift patient spirits and give family members a break and bereavement coordinators provide patients and families with grief support.

Medical equipment Medication, medical equipment and supplies related to the patient’s terminal illness that have been authorized by the hospice interdisciplinary team are provided at no cost to the patient and their family.

These are delivered to the patient’s home, so the family does not need to worry about locating necessary supplies or running extra errands to pick them up.

Life enrichment activities Many hospices offer programs designed to enhance the patient’s quality of life. Crossroads includes several unique programs:

• Gift of a Day gives each patient one day to focus on an activity they love. Some patients have gone skydiving or out to see their favorite musicians, while others have enjoyed special meals with their family or attended a wedding. Some have even gotten married themselves!

• Veteran Recognition Ceremonies honor the service and sacrifice of our military Veterans. And patients can work with a volunteer to create a Life Journal.

• Life Journals are completed with patients and volunteers to chronicle photos and stories for their families to cherish for generations to come.


When is a patient appropriate for hospice?It may be time to consider the added support of hospice care if your loved one begins to make more frequent visits to the hospital, or experiences multiple of the following:

• An increase in falls

• Progressive weight loss

• Weakness

• Skin tears

• Decline in their ability to perform daily tasks including bathing, getting dressed, walking or using the bathroom

A physician must diagnose your loved one with a terminal illness with life-limiting prognosis in order to be eligible for hospice.

Continuing hospice. If your loved one’s condition improves while receiving hospice care or they decide to pursue a curative treatment, they can discontinue hospice care at any time and return to hospice later if their condition changes.

All patients are different, and if a patient receiving hospice care lives longer than the expected prognosis, that’s wonderful news! They can continue to receive hospice care as long as a physician recertifies their eligibility.

How to have an open conversation about hospice. When a loved one is diagnosed with a terminal illness, it is an emotional time, making it difficult for the patient, family members and even physicians to talk about it. However, speaking openly about your loved ones wishes early in the process can help give them peace of mind that everything will be handled according to their preferences.

While it’s best if you have a conversation about your loved one’s end-of-life wishes long before a crisis arises, once they have been diagnosed with a terminal illness, it’s essential for caregivers to have a conversation about their goals as soon as possible.

While even bringing up the topic of hospice can be difficult and emotional, if you do it before a crisis hits, you can talk through your loved one’s options as planning for the future and not an immediate decision.

Ask your loved one what they would like for their final days:

• Do they want to be in a hospital or remain at home?

• Do they wish to pursue curative treatments if they are available, or focus on making the most of the time they have?

• Do they want healthcare professionals to perform CPR, intubate them or use machines to help them breathe and keep their heart beating? Or would they prefer to be kept comfortable at home and allow nature to take its course?

If an individual wishes to remain at home, hospice care will provide the support, supplies and equipment their family will need to provide the best quality of life. Reassure your loved on that you will follow their end-of-life wishes and put them in writing to ensure everyone is on the same page.

Having a conversation about hospice as early as possible will ensure that you have the information you need to put a plan in place before a crisis hits.


Why caregivers shouldn’t feel guilty about calling hospice.We often hear that caregivers think of hospice as “giving up.” But, what they are really doing is giving their loved one the opportunity to make the most of the time they have with the family by ensuring they have the care and support they need.

Already terminal. When a patient is appropriate for hospice, they have already been diagnosed with a terminal illness. It has already been determined that treatments are no longer working or the patient has decided they would prefer to focus on comfort measures to increase their quality of life.

Caregivers should not feel guilty for beginning hospice care. You are not giving up on your loved one. Instead, you are increasing their care to ensure they remain comfortable and well cared for.

Grief support. Caregivers often experience anticipatory grief during this time, already imagining life without their cherished loved one. Our bereavement support team can help caregivers with their grief and feelings of guilt so they can focus on spending quality time with their loved one for as long as they can.

Crossroads is among the nation’s best in the number of hours we spend with our patients, and the time we spend with our patients increases even further in the final 7 days of life. We are committed to being with our patients in their final hours to ensure they and their families have the support they need.


What will happen once I call hospice?

Crossroads is available 24 hours a day, 7 days a week, 365 days a year to admit patients and answer questions. Our team is happy to meet with families whenever and wherever is convenient for them, whether that is their home, a hospital, a care facility or a nearby coffee shop.

Initial phone call. During the initial phone call, our referral coordinator will ask questions about the patient’s current condition and their wishes.

Physician follow up. If a family member is making the initial contact, the referral coordinator will follow-up with the patient’s physician to coordinate a hospice order.

Assessment from admissions nurse. Typically, family members will meet with an admissions nurse, who will do an initial hospice assessment. If the patient is eligible for hospice care, they can be admitted during this visit.

Initiating care – a timeline. When Crossroads receives a call about a new patient, we know that time is of the essence.

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Our team will schedule a hospice evaluation as soon as possible to assess the patient and arrange for a hospice admission. This will typically happen the same day as the call unless the family needs to schedule it for another day. Our team will speak to you about what has been happening in the past few weeks that led to this call. Has the patient fallen? Have you had an increase in hospital visits?

When the admission nurse visits the patient and family, they evaluate the patient’s medical condition to determine if they meet the hospice eligibility criteria for their illness. The admission nurse will also provide information on the services that Crossroads provides and go over all the admission paperwork. This includes a patient information sheet with caregiver, physician and insurance information, as well as registration and consent forms.

Once the patient is admitted, hospice care will begin immediately.

A plan of care will be established with regular visits from the hospice care team including nurses, aides, social workers, chaplains and volunteers based on the patient’s individual needs.

Crossroads will arrange for any medication, medical equipment and supplies that are needed to be delivered to the patient’s residence.


When is it time to call a hospice professional for specific illnesses?Cancer:If your loved one has been diagnosed with metastatic cancer, is experiencing a decline in their condition despite therapy or has elected to stop curative treatment, it is a good time to speak with a hospice professional about the patient’s options.

Even if your loved one is continuing curative treatment, it can help to explore hospice options early so you are prepared in the event of a change in their condition or wishes.

COPD:The slow decline of COPD means that families are often unsure of when their loved one will be hospice appropriate. We recommend that you contact a hospice professional if your loved one has recently made visits to the ER or been hospitalized for pulmonary infections or respiratory failure.

Other things to watch for include:

• Decline in mobility

• Decline in appetite

• Progressive weight loss

• Difficultly doing activities like eating or speaking without becoming short of breath

Kidney/renal disease:If a patient has elected to not have renal dialysis, it may be time to consider hospice. Other things to look for are:

• Pruritus/severe itching of the skin

• Nausea and/or vomiting

• Anorexia

• Difficulty in walking or caring for themselves

ALS: Patients with ALS should consider speaking with a hospice professional if they have experienced a significant or rapid decline in their ability to perform the activities of daily living, including eating, ambulating or speaking.

Dementia/Alzheimer’s disease:For patients with Alzheimer’s disease or other dementia, we recommend contacting a hospice professional when the patient’s physical condition starts to decline. Signs of this include:

• An increase in visits to the hospital

• Difficulty in swallowing liquids or food

• Inability to walk or sit upright without assistance

• Inability to smile

Parkinson’s disease: It can be difficult to determine when the end is near for a patient diagnosed with Parkinson’s disease, as each patient experiences a different progression.

However, we recommend speaking with a hospice professional if the patient is experiencing any of the following:

• Dementia

• Pneumonia

• Weight loss

• Incontinence

• Pain

Cardiac disease: As cardiac disease progresses, patients will begin to experience difficulty in breathing, impaired heart rhythms and a decline in physical endurance, which can lead to impaired mobility and an increase in hospital visits.

Pulmonary disease:Patients may live for many years with pulmonary disease before they reach end-stage. Over time, there will be a gradual worsening of their breathing and with each flare-up, the patient will notice that their lung function doesn’t get back to the level it was before the flare-up.

If your loved one is visiting the ER or hospital more because they can’t catch their breath, or they are finding it more difficult to move or maintain a healthy body weight, you should contact a hospice professional to assess your loved one’s current condition and determine the next steps.

Crossroads partners with your primary care physician to provide extra support.


Early palliative care options.

For those patients who do continue curative treatment, Crossroads also offers the option of occasional palliative care visits from a nurse practitioner and social worker, to address pain and symptom management, including side effects from cancer treatments or edema and trouble breathing in patients with congestive heart failure or COPD. With diseases like ALS or Parkinson’s disease that have a progressive degeneration of motor nerve cells, Crossroads offers palliative care support in the home early in the disease progression to help manage pain and other symptoms until the patient is eligible for hospice care.

If it’s not yet time to call hospice, consider that palliative care can still treat pain and symptoms to make the patient’s life better.

Hospice is not giving up.We hope your biggest takeaway from this document is that deciding to put your loved one on hospice should not be viewed as giving up on your loved one. To the contrary, if a medical expert has determined that curative treatment is no longer viable, choosing hospice care is the kindest thing you can do for your loved one, making an effort to ensure the remaining time left is as pleasant as possible, with less pain, discomfort and timely visits to the hospital, and more time enjoying life, loved ones and unique activities available through Gift of a Day and other special programs.

We are here for you 24 hours a day, 7 days a week. Please feel free to call to speak confidentially with a hospice care expert: 888-564-3405.


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When you should make the call to a hospice professional