When CurePSP was the Society, it published at least twice hospice nurse Bill Carroll’s article on hospice in the PSP Advocate (now called the CurePSP Magazine). Here’s the text of his great article. (On the PSP Forum, Bill goes by 104fm.)
WHEN SHOULD HOSPICE BE CONTACTED FOR SOMEONE WITH PSP?
William Carroll, RN, CHPN
HealthCare Dimensions Hospice, The Dana Farber Cancer Institute, Boston, MA
The PSP Advocate, 2006 (1st issue)
As a participant in the online discussion forum available at forum.psp.org, I have often been asked my opinion as to when is the apropriate time to contact hospice. I receive this question fairly often because of my background and current employment as a registered nurse working in Hospice for Healthcare Dimensions, a subsidiary of the Dana Farber Cancer Institute. I also have a family member who has been diagnosed with PSP.
There are basically two separate Medicare benefit programs that may be available for people with PSP and their families. These include the Medicare Home Health Benefit and the Medicare Hospice Benefit. Many private insurances have guidelines for qualifying for their own programs, but quite often, they are virtually identical to those offered through Medicare. It is usually worthwhile to review the publications available from the insurer and then speak with the benefit administrator to see what is available.
Each of the two plans has separate criteria which need to be met in order to qualify for the program. For the Medicare Home Health Benefit there must be a need for skilled care (custodial care alone, such as would be provided by a nurse’s aide, generally would not qualify), and the patient must be home bound. In the case of the Medicare Hospice Benefit, both the admitting physician and the Hospice Medical Director must certify that they believe if the disease runs its normal course, the patient has a prognosis of six months or less.
With many diseases that have an unpredictable rate of progression, and PSP is definitely no exception, determining a six-month prognosis with any true accuracy is extremely difficult. In consideration of this, the Medicare Hospice Benefit provides for unlimited renewals. Basically, this means that provided the admission criteria is still met, a person could potentially be eligible to receive all the care and benefits that Hospice provides for well beyond the original six-month prognosis.
Another question I am often asked is, “When is it the appropriate time to contact hospice?” People are sometimes taken aback by my most common response, which is often, simply, “today.” The reason I feel this is the most accurate answer is that by contacting hospice today, you have absolutely nothing to lose, but a priceless amount of information, support and services to gain. When contacted, many hospices will give you the option of having a nurse come to the home (or nursing home if that is where the patient resides) and explain the benefit. The nurse can often tell you on the spot whether the hospice benefit may be available as an option now, or, if not, what criteria would need to be met in order to qualify.
Upon accessing the Hospice benefits, a registered nurse will be assigned whose focus will be on controlling the symptoms of the disease and helping to promote the best quality of life possible. The nurse will come to the home (usually from one to seven times per week, depending on need) for ongoing symptom management. There is also a registered nurse available 24 hours a day by phone for the hours that the assigned nurse is not available. A social worker will also be assigned who can assist in obtaining any available community resources, as well as helping both the person with PSP and the family deal with the emotional aspects of the losses this disease can bring. A non-denominational pastor can also be assigned who can work alone or in conjunction with community clergy to help cope with the spiritual aspects of dealing with the disease.
In addition, nurse’s aides can be included to assist with personal care, such as bathing and dressing. Nurse’s aides generally visit from two- seven days a week, depending on need, and stay from 1-1 1/2 hours per visit. Trained volunteers can also become involved. They can help by making friendly visits to sit and read to the patient, running errands, assisting with rides to appointments or helping in any other way possible. Other services, such as speech or physical therapy, can also be included as part of the hospice plan of care. By invoking the benefit, you gain access to a team of well-trained professionals whose focus will be on providing the person with the absolute best quality of life possible. In addition to the professionals involved in the care, hospice also covers related medications as well as home medical equipment, such as walkers, wheelchairs, commodes, hospital beds and other equipment.
An additional positive aspect of the hospice benefit is that it can be provided not only in the home setting, but also in nursing facilities and hospitals. Often, people have other insurance in addition to Medicare, such as Medicaid or long-term care insurance. If this is the case, the additional insurance can sometimes be used to cover the cost of being in a nursing facility, while Medicare is used for the hospice services. Some patients choose to use hospice houses, which are facilities that deal exclusively with hospice patients and often strive to create a more homelike environment as opposed to a medical one.
Of all the families I have had the pleasure and privilege of being involved with, the ones who have gained the most from the program all had one basic thing in common. They accepted all of the services and benefits hospice had to offer. Although there is no obligation to accept the involvement of all of the different team members, I strongly encourage doing so. Each member has something different to offer that often can compliment what the others provide.
Hospice is a benefit that is available much sooner than most people realize. Referrals for hospice evaluations can be made by patients, friends or family members, and can be called in directly to any hospice in your area. The service does not need to be initiated by a physician’s office, but it is often helpful to find out which hospices your doctor recommends.
William Carroll, RN, CHPN is a registered nurse who is nationally certified in Hospice and Palliative Care who is currently employed by HealthCare Dimensions Hospice, a subsidiary of The Dana Farber Cancer Institute.
[later on 12/22/09: removed a link Bill thought no longer appropriate.]
Why is there a delay in getting to refrigeration? There are multiple possible reasons for this, including:
The family, hospice agency, care facility, or caregivers should prepare several gallon-size re-sealable Ziploc-type bags with ice. The bags should be about half-full. These can be placed in a nearby freezer (at home, for example).
Our condolences to the family on your loss!
Use several gallon-size, re-sealable Ziploc-type plastic bags of ice or frozen gel packs around the head. (The bags should be about half-full.) Place the bags or packs at both temples, on the forehead, at the top of the head (as if it were a crown), and behind the head (as if it were a pillow). There is no need to place something on the face. Sometimes hospice staff can use a pillowcase or hand towel to discreetly hide the plastic bags/gel packs and keep them in place.
Once the ice is in place, have peace of mind that your loved one’s brain is being kept cool. Spend the time you feel you need. How much time you have is dependent on the time of day and when the brain donation work can be performed in your family’s particular case.