Is 'Going Hospice' a stigma?

[FireStarterRN]

My nurse buddy and I just got together for our regular walk and lunch. I was telling her the story of a patient I had recently who was an endstage COPDer. There was the question of possible Hospice and a conflict between our inept social services director and the doctor as to the patient's wishes. The social worker had let me know that there was a conference with the family at 1PM and later said that everything was a go for the patient to go home on Hospice.

At 4PM the doctor called saying that when he spoke to the patient in the morning, the patient had expressed that he didn't want Hospice but wanted to go home with a hospital bed and some home health help.

We all know our social services woman is a flub up, so I decided to go directly to the patient and ask him his wishes, explaining the choices in a frank manner. He just didn't like the idea of Hospice, and just wanted to go home with a hospital bed.

My friend and I agreed that Hospice is rather an undignified stigma for many, and too narrow of a program. A patient prefering a simple comfort care plan should be entitled to Hospice type services without being labeled "Hospice" which means "Sentenced to Death" in many people's minds. The Hospice program here has a lot of requirements. And, the word Hospice is a turn off to many patients and their families.

[fmrnicumom]

Do most hospices have requirements such as

I agree, there is a stigma to hospice. I wish there wasn't, because I know how beneficial hospice services can be. I saw what an enormous difference they made for my grandma. I probably should add that she was not afraid of death. Her belief in God was very strong, and she knew where she was going. I think that helps.

Leslie, *awesome* post! You are definitely right that we, as a society, place too much value on the wrong things.

Tiffany

[Tweety, BSN, RN]

I've had several patients refuse Hospice exactly because their perception was that it means they are surrendering to death. Hopefully people will become educated and nurses can be at the forefront of this.

[tencat]

Yes, I think hospice is a 'stigma', but as Leslie said so eloquently, it shouldn't be because death is part of life. Even medical people have a hard time wrapping their heads around hospice because it seems to be so contrary to what we're taught to do in medicine ie: cure people. Hospice is not about restoring someone to health and vigor. Instead of 'curing' hospice aims to enhance what remaining time a patient has left and ease the dying process.

I agree with what another poster said about physicians only resorting to hospice when they have exhausted even futile options. Just because we can keep someone 'alive' with modern medicine, it doesn't mean we should. There's the academic definition of life, and there's also quality of life. How many of us would love to be comatose on a ventillator? We'd still be alive, right? I don't know about the rest of humanity, but I for one would really not want to go there myself.

[callmekipling]

If there is no greater purpose to life than serving oneself, it stands to reason that serving oneself best connotes living as long as possible.

Watch TV commercials for half an hour (especially at this time of year) and tell me we're not reinforcing the me-first philosophy.

That's what really riles people - death, especially accepting the eventuality thereof, is acknowledging [God, fate, the enduring trend of the universe]'s superiority to Your Own Will.

too narrow of a program. A patient prefering a simple comfort care plan should be entitled to Hospice type services without being labeled "Hospice"

Pro Tip: If you want a black and white milkshake but you don't want the chocolate, you're actually hankering for a vanilla shake . Look into palliative care that isn't hospice for your pt.

[al7139, ASN, RN]

Hi everyone,

I loved Leslies post about Hospice.

Where I live, hospice does have the requirement that the pt most likely has

At my hospital, we also have a "Palliative Care" team of MD's and other health care persons, who assist patients who are dying, or have a medical condition that may not cause death within 6 months, but will inevitably cause their death.

Either way, the staff are in my experience wonderful. They are caring and empathetic, offer counseling to the pt and family, and will do everything they can to make the life they have left comfortable.

My own experience before I became a nurse really changed the opinion I had about hospice care. My father was diagnosed with stomach cancer. By that time it had metastasized and was incurable. The oncologist tried chemo for a short time, but it did not work, and was just making my dad suffer more. They stopped chemo, and he had home health care through a local hospice. I was not employed at the time so was able to be my dad's caregiver so my mom could continue to work. The hospice nurse who came to care for him was one of the most wonderful people I had ever met. She had never met us, yet truly cared not just about easing my dad's pain, but about how we were, and our needs during this time. Her presence and kindness and genuine care helped get our family through one of the most devastating experiences of my life. She came twice a week, but would call to check on us, was available by phone if we had questions, and made my dad's passing as comfortable as was possible for him and us. She helped us to accept the reality of his illness, and supported us so we could be there for him.

My father died 7 weeks after he was first diagnosed with cancer. I am thankful his passing was quick, and did not suffer a long, painful death because of the care he received from hospice.

My experience with hospice, and my fathers nurse is largely the reason I switched careers and became a nurse myself. While I don't work in hospice, I frequently experience the death of a patient under my care. I try my best to exemplify my dad's hospice nurse in my practice with the patients and their families, whether they are dying or not.

Hospice is not a death sentence, but a choice the patient and family make. Rather than continuing to fight the inevitable, they choose quality of life over quantity.

I think that alot of people don't understand that it is a choice, not something that they are forced into.

Amy

[NRSKarenRN, BSN, RN]

my friend and i think that there should be a more comprehensive comfort care program aimed at providing comfort care, without the restrictions of hospice and the negative connotation the word evokes in peoples minds.

palliative care programs provide the type of care you describe. they can be part of some hospice programs or offered by a home health agency.

federal and state regulations govern how hospices are operated, especially insurance payer medicare regulations which require that physician document life expectancy less than 6 months. every home health rn completing oasis admission paperwork checks off question m0280 life expetancy: less than 6 months, more than 6 months so we are used to thinking about and talking about this issue.

part of our jobs as nurses is to educate ourselves to what services are available in the community to assist clients/patients....big world out there behind those hospital walls....my 20 yrs homecare/hospice bias kicking in here. :) an inservice is great way for varous hospice and home care agencies to present info to nursing staff regarding patient services outside your building so you can ifrorm patients/families what's available.

recognizing our area has unmet need for palliative care, my agency started palliative care program 3 months ago and i sat in on yesterday's meeting. the language/verbage we choose to use when discussing end stage illness makes a huge impact on patients and what type services they transtition to at discharge. changing perception from "death sentance" to "celebrating end of life" while providing physical, spiritual and emotional comfort care is difficult but can be done.

[color=#0000cc]palliative care

palliative care is specialized care focused on the pain, symptoms and stress of serious illness.

[color=#0000cc]palliative care vs. hospice care - definition

for clinicians

is your patient appropriate for a palliative care referral? a palliative care consultation will assist you in managing complex pain, symptoms, comorbidities, patient/family communication and other issues. the following criteria have been developed to help you assess whether a palliative care consultation would be beneficial to you and your patient.

general referral criteria (one or more of the following)

presence of a serious, chronic illness:

• declining ability to complete activities of daily living
  
• weight loss
  
• multiple hospitalizations
  
• difficult to control physical or emotional symptoms related to serious medical illness
  
• patient, family or physician uncertainty regarding prognosis
  
• patient, family or physician uncertainty regarding goals of care
  
• patient or family requests for futile care
  
• dnr order conflicts
  
• use of tube feeding or tpn in cognitively impaired or seriously ill patients
  
• limited social support and a serious illness (e.g. homeless, chronic mental illness)
  
• patient, family or physician request for information regarding hospice appropriateness
  
• patient or family psychological or spiritual distress

intensive care unit criteria

• admission from a nursing home in the setting of one or more chronic life-limiting conditions (e.g. dementia)
  
• two or more icu admissions within the same hospitalization
  
• prolonged or difficult ventilator withdrawal
  
• multi-organ failure
  
• consideration of ventilator withdrawal with expected death
  
• metastatic cancer
  
• anoxic encephalopathy
  
• consideration of patient transfer to a long-term ventilator facility
  
• family distress impairing surrogate decision-making

oncology criteria

• metastatic or locally advanced cancer progressing despite systemic treatments with or without weight loss and functional decline;
  • karnofsky 3
    
  • progressive brain metastases following radiation
    
  • new spinal cord compression or neoplastic meningitis
    
  • malignant hypercalcemia
    
  • progressive pleural/peritoneal or pericardial effusions
    
  • failure of first or second-line chemotherapy
    
  • multiple painful bone metastases
    
  • consideration of interventional pain management procedures
    
  • severe prolonged pancytopenia in the setting of an untreatable hematological problem (e.g. relapsed leukemia)

emergency department criteria

• multiple recent prior hospitalization with same symptoms/problems
  
• long-term care patient with do not resuscitate (dnr) and/or comfort care (cc) orders
  
• patient previously enrolled in a home or residential hospice program
  
• patient/caregiver/physician desires hospice but has not been referred
  
• consideration of icu admission and or mechanical ventilation in a patient
  • with metastatic cancer and declining function
    
  • with moderate to severe dementia
    
  • with one or more chronic diseases and poor functional status at baseline

[FireStarterRN, BSN, RN]

Great information Karen! My community doesn't have an official palliative care program. We have in home Hospice which works closely with homehealth. Perhaps as our population grows we'll get more choices. It sounds as if the doctors here order homehealth for palliative type care that doesn't meet hospice requirements.

Thanks!

[FireStarterRN, BSN, RN]

Another problem I've read about on other places on the internet is that there are some people who somehow think Hospice has something to do with euthanasia. There is a segment of the population that has this misperception.

[freesia98]

One of the things that I always talk to patients about in a hospice discussion is the recertification periods. Recert periods: 90 days after admit, then every 60 days throughout care. At the time of recert the MD recertifies that if the disease runs its natural progression the patient has 6 months or less to live. That said, we don't know how long a patient has to live and hospice frequently cares for patients longer than six months.

Is it against the medicare rules: no. The recerts basically allow for another 6 months every time they are recerted.

Does that mean anyone can be admitted to hospice regardless of life expectancey: no.

What it does mean is that patients that meet the medicare guidelines as hospice appropriate can get the care they need, even if they live longer than 6 months. Usually giving people information and discussing their options helps them to feel better with the hospice choice.

Patients are also able to revoke care at any time for any reason, so if MD says "I have a new treatment," the patient only needs to sign revocation paper to be released from hospice care.

If (and I have personally seen this!) a patient gets better, they can be discharged by the hospice and other care arrainged.

Yes, palliative care can help, but it is not like hospice. If you can find a program that is home based, the MD, PA, or NP may only visit 1/month or less and medicare does not pay for nursing care in palliative care. It truly is only for patients that have the ability to care for self or have someone to care for them. It is not even close to the comprehensive care hospice care is. Palliative care does not pay for meds or dme that may be needed for a patient to remain in home environment. It is really for patients with more personal support and reimbursement for needs. Hope this info helps.