Hospice Care- Aspect 2
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Hospice Care- Aspect 2
Ethical Concerns about Hospice
Curated by Jessica Tuite
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Hospice Ethics Institute Explores End-of-Life Issues

Hospice Ethics Institute Explores End-of-Life Issues | Hospice Care- Aspect 2 | Scoop.it
When a person faces a critical illness in a hospital, usually the medical personnel focus on trying to prevent death.
Jessica Tuite's comment, March 12, 2013 8:18 AM
People who have terminal illnesses often get put into a hospice vicinity, the caregiver and family members have to except the death is coming to be understanding about what happens in hospice. The hospice provides a comfort for the patients that their home may not give them. Usually, people in hospice are not just there because there family does not have time to take care of them but because they need the professional support of the works, nurses, and doctors.
Jessica Tuite's comment, March 13, 2013 7:54 AM
Ethics in hospice differ between hospitals, hospices, and patients. The ability to help and prolong an individuals life span is key. "In a hospice, the patient and family are the unit of care, which means that several different points of view come into any decision." "Sometimes those points of view are in conflict." Issues always arise wherever you might be but handling them and comforting the patients help with this conflict.
Jessica Tuite's comment, March 13, 2013 8:01 AM
Some patients go through a tremendous amount of pain. Some obviously worse then others but each patient needs be treated for there conditions. For terminal patients it can be a little more difficult: "feeding tubes, pain management, total sedation, and assisted death," come into play. The most important part that the hospice plays is comforting each patient for a peaceful death.
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Jessica Tuite's comment, March 12, 2013 8:03 AM
There is a hospice ethics committee is most cases, the team meets regularly to focus on the issues and concerns of there patients and families. They try to correct the issues, to keep from distracting patients.
Jessica Tuite's comment, March 12, 2013 8:12 AM
"The more difficult question about withholding or withdrawing comes
when the patient is no longer alert or oriented and the family caregiver requests that life-sustaining treatment be discontinued." They have to make the right decision and make sure the family is okay with the choice. At times, their decision does not matter it is what the caregiver wants and decides. This may make it very hard on the team members to agree on.
Jessica Tuite's comment, March 13, 2013 9:02 AM
The caregiver is the family member that decides what happens to the patient. It is a lot of responsibility and frustration. It hard to please everyone but the most important is the patient. Whether or not to take the patient off life support or to keep fighting to stay alive. Not everyone agrees with what hospice does but others see the good in it. Comforting people on there last days is most important.
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Teacher's Comments

Senior Research project

Jessica Tuite's insight:

Ms. Yaklich

Tami Yaklich's comment, March 20, 2013 8:32 PM
Good job paraphrasing. Excellent info from interview source, but be sure to add interviewee's full name and contact info
Tami Yaklich's comment, March 20, 2013 8:32 PM
Score: 30/30
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Hospice ethics presentation

Ethical Issues of Hospice and the Loss of Technology
Jessica Tuite's comment, March 13, 2013 8:08 AM
To hospice the quality of life is much more important then the length of someones life. They treat patients and families: "physically, spiritually, and emotionally." Families often reach out for this support and guide to a dignifiable death for there loved ones. Hospice is not about finding a cure to someones illness, it is treating them for there condition and preparing them for death.
Jessica Tuite's comment, March 13, 2013 8:14 AM
Some patients do not even have family there for them, they are alone and the nurses often help with that by becoming very close to them and making them feel very comfortable talking to them and listen to everything they have to say. Some ethical concerns involve a respect for patient autonomy, access to care, and overcoming barriers.
Jessica Tuite's comment, March 13, 2013 8:18 AM
Decision making in the hospice is very hard, uncertainty is huge. Many patients might be on life support and not responding to medicines or completely unresponsive. They have to think about what the patient wants and how they feel before acting on something.
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Interview with Susan: Registered Nurse


Jessica Tuite's insight:

1.) How flexible is the hospice service in negotiating patient differences?


First I would ask you to define “patient differences.”  Differences in approach to hospice care? Differences as in cultural differences?  Differences as in complaints with the agency?  I’m not sure what you mean by patient differences, but I will give you a general idea of how hospices work with patients and their families, as their families/loved one are an integral part of patient care. 


Each hospice agency would have its own policies for dealing with patients. However, the Centers for Medicare Services (CMS) dictates a number of “must-haves” for a hospice to be licensed. A hospice agency must be able to accommodate, or make reasonable attempts, patients’ requests for services such as volunteer services, culturally driven needs, religious accommodation, etc. Some things within hospice care are up for “negotiation” (how often a patient is visited in the home, for instance); some things are not … such as seeking aggressive treatment for the hospice diagnosis.


How flexible an agency is would be contingent upon adherence to CMS guidelines (we cannot defy them) and the available staffing of the agency.


It’s a vague answer, I know, because I’m not sure what type of differences you are referring to.


2) Does the agency work with the family to generate a professional plan of care for each patient? Will the service provide you with a copy of this plan?


Absolutely! A hospice agency is required to develop a professional plan of care that is individualized for each patient and updated on a regular basis to reflect the changing needs of the patient as they decline. The agency will provide a copy of the plan, if requested, and should review the plan of care regularly with the patient or their caregiver. If the patient is in a nursing facility, the facility is given a copy of the plan of care and regular updates.


3) Is this plan updated periodically or when the need arises?


The plan of care is updated on a regular basis, but not necessarily on a scheduled basis. It is updated as changes are made to the plan of care which should be frequently if the patient is truly hospice eligible. It is anticipated that a hospice patient will decline and his/her needs change as their condition deteriorates. For instance, the patient may have been able to feed himself when initially admitted to hospice but eventually require assistance or to be totally spoon fed by the caregiver. The plan of care should be amended to reflect this need.


4) Does the hospice require a primary caregiver?


The hospice does not require a primary caregiver but it is not often that a patient is self-sufficient if they are on hospice care. To be eligible for hospice, a patient must meet certain conditions and that usually includes a decline in the ability to perform self care. It is not an absolute, however.  Some hospice patients do live alone. A hospice agency may require the patient to sign a “live-alone agreement,” however, whereby the patient agrees to seek or accept help if they are no longer safe living alone.


5) Will the hospice work with the caregiver to cover job schedules, travel plans, or other responsibilities?


The hospice agency is never the primary caregiver. They can provide a list of resources to families, assist in finding paid caregivers at the patient/family’s expense, assist in finding appropriate placement (assisted living, skilled nursing, etc.). The hospice has a Social Worker who works with the patient/family for these needs. The agency can offer volunteers to assist in certain aspects—a volunteer may come to sit with the patient while the primary caregiver (PCG) goes to the grocery store or has a doctor’s appointment. These volunteers, however, are not usually caregivers and cannot assist the patient with bathing, showering or toileting. Respite care is available if the PCG experiences caregiver breakdown or has traveling plans, but it is limited to a five-night stay in a facility that is staffed by RNs on a 24-hour basis, as dictated by CMS. This is non-negotiable per the regulations that dictate hospice services. If the hospice were to accept care of a patient beyond the 5-night maximum, they would not be reimbursed for this care. The facility the patient stays in (if the hospice does not have their own inpatient facility) may charge the patient for the time spent over the five-night maximum stay.


6) Does the service hold an evaluation to determine patient needs?


The hospice agency is required to hold an “Interdisciplinary Team” meeting at least every 15 days to discuss each patient in the hospice’s care. This team must involve the medical director, the RN case manager (the primary nurse for the patient), social services, spiritual care, bereavement care coordinator and, often, the volunteer coordinator also. The plan of care of reviewed and updated as each member of the team contributes to the discussion of the patient’s needs. For instance, spiritual care may have learned that the patient is experiencing a crisis in his belief system as the realization of impending death becomes more apparent. The team would discuss this need for spiritual support and update the plan of care appropriately and determine ways to assist the patient in resolving this crisis and finding peace.


7) Does the service consider what the patient can do for him or herself?


The plan of care incorporates the patient’s abilities for self care. A patient is supported in self care as long as he or she is able as it promotes self-esteem and dignity.


8) How many personnel references does the agency require?


References for whom? I assume you’re referring to the hiring of new employees. There is no hard rule for this; it would be based on each agency’s policies. Typically, a firm asks for three professional references. There is no CMS requirement for personnel references.


9) Are the hospice workers licensed and bonded?


The term “workers” is broad. There are many workers involved in a hospice agency: clerical staff, medical records staff, couriers, etc. Not all workers are required to have a license. Nursing staff must have a license; social workers also are licensed. Most agencies require that nurse’s aides be certified (which includes a license) but not all do. Chaplains or spiritual care workers are not required to be licensed, nor are volunteers or administrative or clerical staff. The agency carries professional liability insurance. Some workers may carry their own liability insurance also but that is not a requirement.


10) Does the agency have a routine way of handling complaints?


Again, this will be driven by each hospices’ policies and procedures. Any hospice that provides excellent customer service should have a formal procedure for handling complaints. 


11) How does the agency handle billing?


The primary payor of hospice services is Medicare. Individual insurance companies may also cover hospice care and tend to follow Medicare’s rules. The agency collects the time spent with each patient by each discipline (nursing, home hospice aide, spiritual, social work, etc.), tallies it and submits it to Medicare or the insurance company on a monthly basis. This time is reimbursed on a time-spent basis, however; it is a verification that services are being provided as dictated by Medicare. Payment is based on the level of hospice care a patient is receiving at a flat rate (there are four levels to hospice care—routine, inpatient, respite and continuous).


12) Will the agency help find financial assistance?


The agency’s social work department will assist in finding and applying for financial aid.


13) Are there payment plans available?


The patient rarely pays for hospice services. There are rare cases where a patient would ‘self-pay’ for hospice. Most are covered by Medicare or insurance and a hospice agency usually accommodates some patients with free care. The availability of payment plan would be dependent on each agency’s policies.


14) How quickly do hospice services begin?


Once a patient has been determined to be eligible for hospice care, hospice services begin as soon as legal consents are signed and the admission process is complete. In most instances, the admission process is begun within hours—if not immediately—upon signing of legal consents.  By CMS requirements, a nursing assessment must be completed within 24 hours, and social services and spiritual care initiated within the first 5 days.


15) What are the policies regarding residential admission? Inpatient care?


I’ve never been associated with an agency that provides residential hospice care. My understanding is the patient must, of course, be eligible for hospice services (which means they have a six-month life expectancy and have evidence of decline) and who cannot receive care from family or other caregivers. Medicare or private insurers may not cover this care; it may be covered under long term care insurance or paid for by the patient. Residential hospice care is not covered under Medicare’s hospice benefit.


Inpatient care must be provided by a hospice when the patient demonstrates symptoms that are out of control and unable to be managed within the patient’s usual setting, most commonly home or assisted living. Inpatient care must be provided at a facility that is staffed 24-hours with an RN, provide sufficient space for family to visit, and private area to speak with team members. It is intended to be short-term care for the management of symptoms. Once the symptoms are controlled, the patient is to be returned to their home/place of residence under routine hospice care. Imminent death is not necessarily adequate criteria for inpatient care UNLESS there are symptoms to be managed such as severe shortness of breath, pain or agitation/delirium. Inpatient care can be provided at a free-standing hospice inpatient unit, a hospital or a skilled nursing facility.


16) How do you deal with stress?


Medical professionals are known to have a peculiar sense of humor. Humor is a great stress reliever, and I find laughter to be one of the best de-stressors. Talking and venting with co-workers about stressful situations is helpful. At home, my husband is a great sounding board; I appreciate his attentive ear! I also spend my spare time de-stressing in the kitchen!



17) How would you handle a difficult family member?


First and foremost, by listening.  Listen to what they’re saying, try to get the whole picture and understand what else is going on. Having a terminally ill family member under hospice care is such a strain in itself but there can be other issues pressing on them, too…job concerns, health problems of their own, having to confront their OWN mortality in the face of their declining loved one. Second, by providing information. One of the most common causes for dissatisfaction in health care is the perception of lack of information from the health care provider. I apologize when a family member feels affronted, even if it is not my actions that have offended them. Offer to find solutions; sometimes just being willing to try to fix a situation will mollify a difficult family member. I have found that anticipating needs rather than waiting for a request also helps. Don’t avoid the difficult family member and don’t react defensively to them. Don’t take anything personal!


18) Hospice deals a lot with death and dying. How will you handle this on a daily basis?


Having had a lot of experience with critically ill patients in the Intensive Care Unit, I have seen a great deal of suffering. Many of those patients underwent extensive surgeries or invasive procedures and died anyway. Knowing that death is inevitable but suffering is not, I am comforted by the fact that I can be the one who works to ensure a peaceful, dignified and comfortable death. I still cry when patients die and their family is grieving but I am not haunted by the many deaths. Of course, some deaths are harder to deal with, such as when a young person dies. My faith, my family and the reminder to live each day to its fullest helps to deal with the sense of loss.


19) Describe a good death…


To me a good death would be remaining sentient but without pain or discomfort, with my family at my side. Being able to reminisce about our good times and laugh with them and to draw my last breath with a smile on my face. That’s MY definition of a good death.


What I see as a good death for my patient is similar. Being comfortable, clean, and in the presence of their loved ones, being at peace with dying and ready to move on to the next world.


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