Download Hospice Orientaton for Inpatient Staff

Hospice Orientation for
Inpatient Staff
HOSPICE PHILOSOPHY
Though people are eligible for Hospice as they are facing the end
of their lives, the focus is not so much on death as it is on the quality of the
living that is yet to be done.
A patient is considered ready for Hospice when he/she has 6
months or less to live (if the disease follows its usual course) and is in
agreement with comfort (palliative) care rather than curative care.
Choosing Hospice does not mean giving up but rather an
acceptance of the inevitable and a change in focus. Often much can be
done to improve quality of life even though a cure is no longer possible.
Hospice pioneer Dame Cecily Saunders said, “You matter to the
last moment of your life and we will do all we can not only to help you
die peacefully, but to live until you die.”
The goal of Hospice is to help patients (and their families) identify
and focus on what is important to them before they die. Assisting them in
meeting end of life physical, emotional and spiritual needs enables them to
do this.
Most patients prefer to stay where they are living at end of life,
where they know their caregivers and often think of them as extended
family. Though it may be difficult caring for patients who are dying, it is also
satisfying to be able to provide for their end of life needs. Hospice is a
resource that can help do that.
Hospice Care is covered by Medicare, Medical Assistance and
most insurances. It pays for all visits made by the Hospice interdisciplinary
team – nurse, social worker, chaplain and others who have experience
helping patients with end of life issues such as pain and symptom
management, sharing and making memories, healing relationships, dealing
with spiritual questions, making funeral arrangements or saying good-bye.
In addition, it pays for medicines and basic equipment related to their end of
life disease.
The patient has a choice of which Hospice to use for his/her care.
This choice must be provided legally and ethically.
The RN Case Manager on the Hospice Team works closely with
the patient’s primary physician who approves the admission to Hospice,
authorizes the Hospice Admission Orders and directs the patient’s medical
care.
The Hospice Medical Director does not take the place of the
patient’s primary physician.
The referral process starts with a phone call to the patient’s
(and/or family’s) Hospice of choice. Though Hospice is for the last 6 months
of life, the average hospice patient is only on the program for a little over 2
months and many for less than a week. Most patients and their families
would benefit by being on Hospice for a longer period of time. If in doubt
whether or not a patient is appropriate for Hospice, call the Hospice
Admission Team for an assessment. Sooner is better than later for most
patients.
Hospice Care is always provided to those appropriate for Hospice
regardless of ability to pay, disease, age, race, color, handicap, creed or
national origin. Hospice depends on memorials, gifts, fundraising and grants
to make up the difference between actual Hospice cost and reimbursement.
There are 4 levels of care within Hospice which are based on the patient’s
needs:
1. Routine Home Care is used when needs can be met with intermittent
visits by the Hospice Team and is provided where the resident lives
including inpatient facilities.
2. Respite Care is used when care is being provided by the family and they
need a break so they can continue caring for their loved one. It may be
provided in a Long Term Care Facility.
3. General Inpatient Care is used when symptoms cannot be controlled
with intermittent visits by the Hospice Team. It is provided in a hospital or in
some Hospice Houses. The patient returns home when symptoms are
controlled.
4. Continuous Care is used when General Inpatient Care would be
appropriate but the patient wishes to stay at home. Examples of when this
might be used are for uncontrolled pain, terminal agitation with safety
issues or a rapid terminal decline. Depending on the situation it provides a
hospice nurse for 8-24 hours/day until symptoms are controlled.
The Pillars is HealthEast’s hospice house where routine home care,
respite care or general inpatient care may be provided. It is located in
Oakdale, has 8 beds, is staffed 24/7 by Hospice trained staff and was
designed and built specifically for patients and families facing the end of life.
Hospice aggressively treats pain and other distressing symptoms so
the patient as well as the family can focus on what is important to them as
they face the challenges of dealing with end of life issues and their own
mortality.
Hospice care has evolved and improved from a grass roots
movement when most care was provided by volunteers. Hospice is now
recognized as a professional organization with expertise in palliative care at
end of life. Many Hospice staff are certified in Hospice and Palliative
Care which is a specialty recognized worldwide.
Hospice affirms life, regarding dying as a normal
process and neither hastening nor postponing death.
PATIENT RIGHTS
With an understanding of Hospice Philosophy, it follows that
respect for the rights of the patient and family is of critical importance
during the sensitive months at the end of life. Summarized below is a list of
those rights.
An individual receiving Hospice care has the right to:
• Receive a Hospice Bill of Rights prior to or at the time of admission to
Hospice services.
• Receive care according to the Hospice plan of care, and also participate
in creating and changing that plan of care.
• Be told of changes to the plan of care.
• Be told in advance what services are provided, the frequency of visits
and the different disciplines furnishing care.
• Refuse treatment or services.
• Know the limits to services and grounds for termination of services.
• Know in advance how payment for Hospice services will be covered.
• Receive an estimate of reimbursement the provider expects to receive.
• Know there may be other Hospice agencies available in the community.
• Choose freely among Hospice providers and may change hospice
providers.
• Have personal, financial and medical information kept private and
receive notice of the agency’s privacy practices.
• Be allowed to access their medical record and written information.
• Receive care by people properly trained and competent to perform their
duties.
• Be treated with courtesy and respect, and have their personal
belongings treated with respect.
• Be free from mistreatment, neglect or verbal, mental, sexual and
physical abuse including injury of unknown source and
misappropriation of patient property.
• Receive reasonable advance notice of changes in services or charges.
• Receive a coordinated transfer when changing service provider.
• Voice complaints and concerns regarding treatment or care.
• Know how to contact the individual responsible for handling problems, and
to have the provider investigate and attempt to resolve any grievance
or complaint.
• Know the name and address of the state or county agency to contact for
additional information or assistance.
• Assert these rights without retaliation.
• Have pain and symptoms managed to the patient’s desired level of
comfort.
Adhering to the Hospice Patient’s Bill of Rights assures that
each patient is given compassionate, quality, individualized care along
with the respect and dignity each human being deserves.
COMMUNICATIONS
Communication between inpatient facility employees and Hospice
is vital in meeting the needs and goals identified by the patient and family.
Many times if there are problems, a breakdown in communication is
responsible. For the sake of the patient and his/her family it is everyone’s
responsibility to communicate information.
Generally, Hospice will provide the following sources of information:
• Face to Face communications take place at admission and at each
Hospice staff visit. Visits from the various disciplines vary in kind and
number. Nursing visits are made at least every 2 weeks but are usually more
frequent. Daily visits are made to acute care patients in an inpatient facility.
• Phone communication is ongoing. It begins as plans are made to include
Hospice as part of the patient’s plan of care. It continues as information is
shared regarding the patient’s condition, changes in physician’s orders,
when questions/concerns arise and when circumstances of the patient’s
death are communicated.
• A list of each patient’s Hospice Team will be provided to the facility along
with 24 hour contact information.
• The certification/recertification form reflects the primary physician’s
and Hospice medical director’s agreement that the patient is appropriate for
Hospice services and will include a list of current medications.
• The initial plan of care identifies the services the patient and family will
receive and the anticipated frequency of visits.
• The ongoing plan of care communicates problems, goals and
interventions and is carefully coordinated with that of the facility. This plan
of care is updated at least every 2 weeks. Please notify Hospice of
scheduled care conferences in order to maintain a current plan of care.
• Documentation of visits, assessments, problem solving, communications
initiated and services provided becomes part of the facility medical record.
The Department of Health will be looking for documentation of this
information during their surveys.
CALL HOSPICE FIRST if there are problems with a Hospice patient.
Always notify Hospice if the patient has a significant change in
condition, any time questions/concerns arise and at the time of the
patient’s death.
This is a brief summary of interactions between inpatient care facilities
and Hospices. Working together we can provide the best end of life care possible for
Hospice patients and their families.
COMFORT:
PAIN AND SYMPTOM CONTROL
HOSPICE AFFIRMS LIFE, REGARDING DYING AS A NORMAL
PROCESS AND NEITHER HASTENING NOR POSTPONING DEATH BUT
PROVIDING FOR THE COMFORT AND DIGNITY OF THE PATIENT.
Hospice aggressively treats pain and other distressing symptoms
so the patient as well as the family can focus on what is important to them
as they face the challenges of dealing with end of life issues and their own
mortality.
Comfort care and Hospice care are both used to describe care
provided when there is nothing more that can be done to cure or reverse an
illness, disease or condition.
Symptoms such as pain, shortness of breath, anxiety, nausea and
restlessness may develop or worsen. Though cure is no longer possible,
there is a great deal that can be done to ease physical discomfort and
enhance quality of life. Education and support given to the patient’s family
can also provide comfort and peace of mind.
Comfort has many dimensions. It includes physical, psychological,
social and spiritual well being.
The Hospice interdisciplinary team can work together with facility
staff to ensure that patients and their families are provided the best possible
end of life care including pain and symptom management.
The Hospice Interdisciplinary Team includes:
Nursing Staff: Registered nurses and licensed practical nurses
work collaboratively with facility staff to manage the patient’s physical
symptoms and coordinate the comfort driven plan of care. It is important to
keep open communication to ensure that facility staff and Hospice staff are
working together to assist the patient in meeting end of life goals. The
Hospice Case Manager coordinates care for the patient per Medicare
regulations.
Most hospices work with a set of Hospice Admission Orders which
are developed with the Hospice Medical Director and consulting
pharmacy. The primary physician reviews these orders and indicates which
medications the hospice may initiate to help promote comfort for the patient.
Having these hospice orders in place helps to ensure that symptoms are
addressed as they develop.
The primary physician has given Hospice permission to
initiate these orders as needed to manage the symptoms so it is
important to notify Hospice when a change in the patient’s condition is
assessed.
Hospice staff is available around the clock, the patient’s RN case
manager during the day, Monday through Friday and Triage nurses at all
other times. Call anytime with questions or concerns or to report a change in
a patient’s condition. Most of the time a phone consultation will effectively
address the issue. The need for a hospice visit will be assessed and one
made if needed. Never hesitate to call Hospice.
Social Services: Hospice social workers are available to help with the
psychosocial needs frequently seen at end of life. They may participate in
family conferences along with facility staff to help address concerns, assist
in developing advanced directives or answer funeral planning questions.
They work in conjunction with the facility social worker to meet patient
needs. These needs as well as emotions can be very intense at the end of
life and the Hospice Team can provide additional support during this difficult
time.
Spiritual Care: Frequently spiritual concerns and questions arise at end of
life. The Hospice chaplains are available to help answer those questions, to
assist patients in reconnecting to their church or to their spirituality and/or to
allay fears or spiritual pain. They will work along with the spiritual care
providers already involved in the patient’s plan of care as requested.
Volunteers: All Hospice volunteers go through Hospice orientation and
training (20+ hours). A volunteer may be requested for the patient to help
provide socialization and support during the last weeks and months of life. A
volunteer usually visits with the patient 4 hours a week.
11th Hour Volunteers: These volunteers sometimes assist at the bedside
during the active dying process at the very end of life to provide additional
comfort, support and presence to the patient. They undergo special training
provided by the hospice and have experience in the dying process.
Pain and symptom management at the end of life has a special urgency.
The collaborative goal of the facility and Hospice is to address symptoms in
a timely manner to preserve quality of life. Under direction of the primary
physician, orders can be implemented to help manage the physical and
psychological distress often seen at end of life.
Hospice case managers coordinate care with the patient, family,
primary physician, facility staff and Hospice team to effectively and safely
manage symptoms. Working together, a collaborative, individualized plan
of care will be developed based on the patient’s specific needs.
To summarize: Comfort is multidimensional: Physical, psychological,
social and spiritual needs can all impact a person’s quality of life. In-patient
facilities and Hospice can partner together with the goal being to provide
the best possible comfort care to patients and support to their families
during the often stressful time at end of life.
PRINCIPLES OF DEATH AND DYING
Each death is different depending on the disease, the symptoms
and how well the symptoms are controlled. This includes not only physical
symptoms but emotional and spiritual symptoms are controlled.
“HOW WE DIE REMAINS IN THE MEMORY OF THOSE WHO LIVE ON.”
DAME CICELY SAUNDERS
It is important to provide aggressive pain and symptom
management so the patients are able to focus on what is important to them
as they face the challenges of dealing with end of life issues. The use of
Morphine, Haldol, Ativan or similar medications allows pain and other
symptoms to be controlled. This is not chemical restraint. Controlling
distressing symptoms provides not only great benefit to the patient but to
the family as well as they are able to look back after the death and know
that their loved one died comfortably, peacefully and with dignity.
There are common signs and symptoms frequently seen as
people get closer to dying. Understanding what is normal and even
expected will help to lessen anxieties of family members and caregivers.
Not everyone will have all these symptoms (some may have only a few or
none at all. Some may die very suddenly) but for most people who are
dying it will be a gradual process and many of these signs and symptoms
may be seen.
SEVERAL WEEKS TO MONTHS BEFORE DEATH:
Food and drink become less important. The patient may not be
hungry or thirsty as body functions begin to slow down. He/she may sleep
more, complain of feeling tired, seem less interested in things and be less
talkative. This may indicate that the patient is beginning to prepare for
death by thinking about his/her life and death and what is important may be
different now. This is all a normal part of the dying process.
COMFORT MEASURES:
* Respect
* Support family regarding changes/ Explain that this is normal
* Gently encourage food/fluids
* Don’t force food/fluids
* Offer smaller servings more frequently
* Let patient know it is okay to take only a little or to refuse
* Keep mouth moist with sips, ice chips if able or toothettes
* Allow patient to refuse activities and to rest/nap as needed
ONE TO TWO WEEKS BEFORE DEATH:
Changes in vital signs may be noted including blood pressure
being lower, pulse more rapid and weaker, respirations irregular. Nailbeds
may appear bluish in color or there may be mottling (a splotchy purplish
color) of the knees or elsewhere which comes and goes. The patient may
experience periods of not breathing lasting 10-60 seconds. This is called
“apnea” and will often become more frequent and last longer as death gets
closer. There may be congestion. Fever may be present possibly due to
dehydration, pneumonia or changes in temperature regulating areas of the
brain. There may be confusion or agitation or the patient may be sleeping
more and be difficult to arouse at times.
Comfort Measures: Notify Hospice with changes in the patient’s
condition so that medications etc. from the Hospice Admission Orders can
be initiated as needed to facilitate comfort.
In addition:
• Keep patient clean and dry
• Turn, lotion, do mouth care every 2-4 hours as needed
• For congestion: Elevating the head of bed or repositioning may help
• For fever: Cool cloths or tepid sponge baths, light blanket
• For confusion/agitation: familiar people/belongings, soft lighting, calm
quiet atmosphere
• Of course, medications may be helpful for control of symptoms.
Answering the family’s questions is also important as well as
letting them know about changes in the patient’s condition. It may be
important to them to be present at the time of death if possible. They may
want to be a part of caring for the patient. Allowing family to be as involved
as they wish to be may help them during the grieving process after the
death of their loved one.
Sometimes what may at first seem to be confusion is actually part
of the dying experience. The person my talk with loved ones who have
died or may see angels or hear beautiful music. Almost always these
events are talked about very calmly by the person who is dying and seem
to provide comfort to him/her.
Some may talk very openly about the fact they are dying, others
won’t talk about it at all. Others may talk about getting on a bus or train,
standing in line or buying tickets, something related to leaving. Again, this
is not always confusion but it may be their way of talking about their
impending death.
COMFORT MEASURES:
• Be open to what the patient is telling you
• Don’t automatically assume he/she is confused
• Ask things like:
“What are you seeing or hearing?”
“What are you more aware of now?”
• Spend quiet time with them if only for a few minutes
• If they express fear of dying, find out what frightens them about it:
Are they afraid of more pain or difficulty breathing?
Are they worried about family members?
Are they fearful of what comes after death?
• Notify Hospice about these concerns. Depending on the situation it
may be a chaplain, social worker and/or nurse who will be the most helpful
to the patient at this time, perhaps from hospice, perhaps from the hospital.
• Encourage each family member and the patient to spend one to one time
together to share whatever they wish the other to hear.
• Share the “4 Hospice Gifts” with them – a tool to help families
communicate, to say (1) “I’m Sorry”, (2) “I Love You”, (3) “Thank You”, (4)
“Good bye. It’s okay for you to go”.
DAYS OR HOURS PRIOR TO DEATH:
As the patient gets closer to death the radial pulse usually
becomes more rapid, weaker and harder to feel, respirations more irregular
with increased and longer periods of apnea. Congestion may become
worse and constant (death rattle) especially if medications to dry up the
secretions have not been used. Skin may become cool and clammy with
mottling of the arms, the underside of the body and especially the lower
legs. This is a sign that blood circulation is beginning to shut down. The
patient may be restless or non-responsive. Eyes may be glassy. Urine
output may be decreased and the patient may be incontinent as muscles
relax. Pain may increase, decrease or stay the same.
COMFORT MEASURES:
• Remind family that patient is still able to hear and encourage sharing the
“4 Hospice Gifts” if this hasn’t been done previously.
• Talk to him/her as you do cares – what day it is, what time, the weather,
who is visiting, etc.
• Watch for non-verbal signs of pain (restlessness, grimacing, moaning with
turns, etc.) and notify Hospice if it continues after PRN medication given.
• If patient appears comfortable, continue giving scheduled pain medication
so he/she remains comfortable. If concerned about giving scheduled pain
medications, please discuss with Hospice before withholding them.
• Use incontinent pads or briefs as needed.
Notify Hospice of changes in the patient’s condition including discomfort
or distressing symptoms. The goal is to provide comfort so the patient is
able to die peacefully with respect and dignity and that the family is
comforted knowing this.
REMEMBER: These signs and symptoms are normal and common in
the dying process. Feel free to call Hospice any time with questions
or concerns.
GRIEF & LOSS
“If we have loved, we will grieve. Grief is a natural expression of our
love.” Dr. Alan Wolfeldt
What is Grief?
Grief is the normal process of reacting to a loss.
We experience personal loss and change throughout our life such as:
• When we relocate.
• When there’s a change in relationships including divorce.
• If we experience loss of health or mobility.
• And then of course, when we experience the death of a loved one.
You may experience grief and loss in the workplace.
As you become connected with your patients and their families and THEN
when the patients die, not only do you lose the relationships with your
patients but you often lose your connections to their families.
REMEMBER that there is no right or wrong way to grieve.
Everyone reacts to grief differently – our reactions are as unique and
individual just as our losses are different.
Our grief reactions are normal. It is normal for people who are
grieving to have a wide range of reactions. Initially we may feel numb and
be in shock, even if the death was anticipated. We can’t believe that it is
real. We can’t believe that our loved one has died.
We may have intense feelings of sadness, loneliness and
emptiness. We may experience some anger or feelings of guilt or
regret. Or we may have some feelings of relief if our loved one has
suffered or been sick a long time.
Spiritually, we may struggle to find meaning in our loss. We may
need to give or receive forgiveness. Or…because of the death of our
loved one, we may feel more spiritually connected.
We respond physically to grief.
We may have difficulty sleeping and eating or we may sleep or
eat too much. We may experience fatigue, exhaustion or restlessness
– stomachaches, headaches and body pains.
Cognitively we may have difficulty concentrating. Our thinking may be
fuzzy and disorganized. We may be preoccupied with thoughts of our
loved one and their final days. Often times we hear people say, “At times
it feels like I’m going crazy!”
Initially, we may withdraw from family, friends and social activities
because grieving takes a lot of energy.
How Long Does Grief Last?
Grief lasts as long as it takes you to accept and learn to live with your
loss.
Even years after a loss, we may experience sadness, especially at
special events such as graduations, a family wedding or the birth of a child.
We no longer think of grief as a series of stages, but rather more like a
roller coaster – full of many ups and downs – highs and lows.
Grief is a journey we must go through.
We can’t go over it or around it.
We shouldn’t put it on the back shelf because it will wait for us.
It is important that we deal with our pain as it relates to our grief and loss.
And our hope is – that over time, as we work through our grief, the pain
will lessen.
That doesn’t mean that we have forgotten or stopped loving the person we
lost.
But rather…it means that we can remember without so much pain.
What Can I Do to Help Myself and Others as We Grieve?
Acknowledge and accept that you are grieving
Be gentle with yourself as you grieve
Be gentle with others who are also grieving
Avoid being judgmental – remember…that each person grieves in their
own way and in their own time.
Grief needs expression.
We can’t ignore our pain.
We can’t just snap out of it.
We need to communicate our feelings.
Tell others what you need and want.
Gently listen to each other.
Offer to help others if you see that they are having a difficult day.
Be specific and follow-up with an action.
Create healthy memories – talk and reminisce.
Take time to remember – this is all a part of healing.
Say thank you and goodbye.
Attend the funeral or memorial service.
Send your families a note saying, “I remember when…”
And remember, if it was a difficult situation, talk about it – don’t
fight about it.
Remember to take good care of yourself.
Balance home, play, work and rest – laugh and have fun.
Seek support.
Know who your supports are – Reach out to them – allow them to
be a support to you.
Remember that asking for help is not a sign of weakness, but
rather a sign of strength.
If needed, seek professional help.
Access your Employee Assistance Program.
Talk with a grief counselor or your spiritual adviser.
Attend a grief support group.
And also, please remember that Hospice is there to be of support
to you as staff and to your patients and their families, whether it be through
Individual sessions
Grief Groups
Debriefings
Or in-services on grief and loss.
Grief is a journey we must go through.
But…we don’t have to take the journey through grief alone.
Thank you for the compassionate care you provide to your hospice
patients and their families especially as they struggle with end of life issues
and symptoms and thank you for allowing HealthEast Hospice to partner
with you in providing that care.