Hospice And Palliative Care

There are many mysteries in life.  Perhaps the greatest one is what happens after life.  It is uncharted territory; it is the unknown.  Beliefs regarding what happens after we die are as individual as each person who holds them, and they will be respected in this post.  But that’s not what this post is about.

Our culture is largely a death-denying one.  Most people don’t like to think about, talk about or plan for death.  We prefer to think perhaps, that we, as well as our loved ones, may not have to deal with this eventuality. 

It’s easier that way.

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Statistics show that approximately 90% of all deaths in America occur after an illness of some length.  Only 10% of the population dies as a result of a sudden event, such as an accident, heart attack or stroke.  This translates into nine out of ten people having some time to prepare for the impending eventuality of their own death. 

I work in the medical field as a speech-language pathologist, a.k.a., speech therapist.  I have worked in nearly every setting, including inpatient acute, inpatient rehab, outpatient rehab, home health, long-term care and private practice. I have treated many diagnoses, with the most frequent being stroke, head injury, brain cancer, Parkinson’s disease and dementia, to name the most common.  There have been multiple others. 

While there are many moments of victory in my work, occasions that I have been privileged to guide the patients on their journey to regain their ability to communicate and/or swallow, many occasions have not ended so happily. Often, the patients I have treated have not been able to regain these or any other functional abilities, and have succumbed to their diagnosis. 

Often, the option of hospice care was introduced. 

In order to quality for hospice care, a person’s physician must certify that their diagnosis will likely not allow them to live for longer than six months.  While not even the most skilled and intuitive doctor can predict this timeline, these are guidelines they follow from their past experience. 

In some cases, the patient may not live this long.  In other cases, they may live longer.  In even more unique situations, some patients “graduate” from hospice care, no longer expected to die within this six-month period.  Others remove themselves from this care in order to continue to receive aggressive medical treatment to work toward recovery.

While in hospice care, the goal is not to ignore the patient’s medical needs.  Rather, its purpose is to allow the patient to receive less intensive and perhaps less invasive treatment, and focus not on cure, but on pain relief if necessary, while maximizing their comfort and quality of life in the time they have left.  It can be seen as an acceptance of their limited time left, with hospice staff aiding them in making the most of this time. 

I recently treated “Brenda,” a patient I had been acquainted with for about a year.  She had required therapy for swallowing problems as part of her multiple diagnoses.  She resided in a facility, and I saw her initially for home health visits there, providing strategies to allow her to swallow more safely.  She was eventually hospitalized for another diagnosis, and released.  Within a week, she was re-admitted for treatment for another of her multiple diagnoses.  She continued to have swallow problems, and I re-evaluated her.  She was at risk for aspiration (food and liquid going into the lungs), and required a pureed diet with liquids thickened to honey consistency. 

She was not happy about this, and neither was I.  I don’t like to take away the pleasure of eating and drinking one’s favorite foods, but in order to keep her swallow safe, it was my ethical and professional responsibility to recommend this. 

This diet and liquid recommendation continued to be a major issue for her, and I understood.  At this point, and like many of my other patients, eating and drinking one’s desired foods and liquids is likely the greatest pleasure they can still enjoy. In addition, she had begged the doctor to release her, but she required more hospital care.  She was also facing the prospect of kidney dialysis, a regularly scheduled procedure that greatly reduces quality of life, and very few people are able to discontinue regular dialysis treatment—typically 3-5 times per week.  Her other diagnoses did not bode well for her long-term health past six months, and the doctor visited with her about hospice care.

Her family was supportive, but she initially declined.  After a few days, however, when she was able to receive more information and have more time to think about it, she decided to accept hospice care.

“I don’t want to come back here.  And I want to eat whatever I want to eat,” she said.  Hospice care would allow this.  She now receives regular visits from a hospice nurse to maximize her comfort and quality of life. 

I need to go visit her.

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Medicare and most insurance policies cover hospice care. It is recognized as an essential element of health care.

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My mother was a hospice volunteer.  She would visit patients in their homes and help the agency with other duties.  She died suddenly almost twelve years ago, and we designated the hospice as one of the memorials.  Having had experience with dying people, and having the inspiration from her, I decided that when I felt strong enough to become a volunteer myself, I would—in her honor, and for myself as well.  So, I did.  For about five years, I, too, visited hospice patients in their homes through our local hospice. 

It is not a volunteer opportunity suited to everyone, but I felt it was suited for me during that time.  I no longer volunteer there, but it was a positive experience. 

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While there are inpatient hospice centers that allow for patients to receive care in a facility—typically to determine the most appropriate pain medication regimen, or to give their caregivers a respite, most hospice care is provided in the patient’s home—which sometimes is a nursing home or other facility. It allows them to feel most comfortable in their most familiar setting. 

Hospice care includes, but is not limited to:

  • pain management
  • providing caregiver instruction on how to care for the hospice patient
  • provides medication and medical equipment
  • assists the patient and family with emotional, psychosocial needs and, if desired, spiritual needs as well.
  • while not provided extensively, physical and speech therapy are sometimes provided to maximize quality of life, not to rehabilitate the patient.
  • provides respite for caregivers, with nurses and/or volunteers sitting with patient to allow them to take care of their own needs.

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While both hospice and palliative care focus on reducing pain and maximizing quality of life, palliative care has an additional element, and is defined as: An approach that improves quality of life of patients and their families who are facing life-threatening illnesses through the prevention and relief of suffering/pain through early identification, as well as assessment and treatment of the pain and the diagnosis/diagnoses causing it.

The main difference is that while palliative care does provide relief from pain and suffering, and attempts to maximize quality of life as hospice does, it also provides treatment as an effort to cure or reduce the symptoms of the long-term illness, while hospice does not attempt to cure.  Hospice recognizes that the diagnosis/diagnoses will likely limit the patient’s life to six months or less, and no active treatment is provided.

Palliative care became a formally recognized subspecialty in 2008, and is also provided in the home, but can also be provided in a short-term hospital stay.  In larger hospitals with well-developed programs, there is a specially appointed care coordinator who oversees the patient’s plan of care, helping to keep all the providers going in the same direction. 

Studies have shown that when such support exists, patients typically fare better in the short and the long run, requiring fewer hospitalizations and/or ER visits, and improved health overall, staying more independent and feeling better at home.

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It has been said that suffering in life is inevitable.  We have all experienced some degree of pain in our lives, either emotional, physical or both.    It is how we manage it that makes all the difference.

Hospice and palliative care are designed to manage physical pain, as well as the emotional and psychosocial pain that accompanies it.

Life and death are uncertain.  Hospice and palliative care are sure things.  If you, or a loved one would benefit from either, please contact your health care provider.   Suffering may be inevitable, but managing it will improve your quality of life.