For those who have read the most recent blog entries, you may have wondered how you or someone you care about would respond to serious illnesses. There are often uncomfortable thoughts that come to mind when you think of your own situation – perhaps your past intent to “get things in order” or simply not understanding all the implications of such health care choices.

As you consider end of life issues, you may recall that formerly a document of instruction was referred to as a “living will.” In literal terms, a will is a document that goes into effect after death. From a healthcare perspective, the decisions about what health care you wish to have is now known as an Advance Care Directive. It becomes a legal document after it is witnessed and signed by you. A signed copy of the Advance Care Directive is to be given to your healthcare providers to become a part of your healthcare records.

Often a person’s family is resistant to discuss end-of-life issues because it is hard to do. However, anyone who reads, watches or hears the news has a good opening to ask family members how they would feel about emergency care for themselves or for you. Another helpful conversation starter is after learning of the illness or injury of another person, or after attending a funeral. For those who completed the living will in the past, it is still effective. But it recommended to review it when you reach a new decade of life, when you have a new health diagnosis, if your previously-named agent has died or is no longer able to serve in that capacity, or if you or your agent may have divorced and no longer have the same relationship with you.

The 2018 forms for Advance Care Planning have been improved to a two-page short form, with additional pages that give more detailed preferences for healthcare. But, as of right now, the question is this: If you could not speak, what care should be given, or not given, if there is not likelihood of recovery? The planning document gives you the opportunity to indicate that, if you were to be permanently unconscious with no chance of recovery, you would prefer: 1) all life sustaining treatments be given, or 2) no live-sustaining treat-ments be given, or 3) I can’t decide, my agent shall work with healthcare personnel to make my decision for me.

It is required that the individual making an Advance Care Directive choose someone to serve as “agent,” to make decisions according to the wishes of the person who is ill. An agent agrees to serve as your advocate, will follow your instructions, has legal power to access medical records, can decide when to start and stop treatments, and may choose the healthcare team and place of care. The agent makes the decisions based on what you want, based on prior discussions and instructions. It is most helpful if your agent lives reasonably close to you, for ease and frequency of in-person conversation with you and your healthcare providers.

Your parish nurse is available by appointment for personal consultations and advice as it applies to your particular situation. Later this year there will be opportunity for group discussion of this topic. Note: If you have your documents signed and given to your healthcare providers from the past, they remain in effect until or unless you make changes to them.

Contact your parish nurse, Dorothy Ellerbroek, at 612-518-4357 for additional information or to discuss questions if you have them.

Hospice: It’s about how you live . . .

The previous two blog entries were focused on basic information about cancer care. One of the readers suggested that information about hospice care would be very helpful. Hospice is a topic about which everyone wonders, but is afraid to ask. Keep in mind that talking about the end of life doesn’t make it happen. This information is that which generally applies to the majority of persons. As your parish nurse, I am available to discuss individual concerns and situations.

Hospice is both a place and a treatment option. Health care in a hospital mostly involves aggressive modes of treatment intended to restore, improve, strengthen the patient to his/her prior state of health. This care regime typically includes recurrent blood tests, scans and xrays, therapies intended to cure a disease or injury. When the clinical condition of the patient does not respond to that care and there are no options for further healing, there often needs to be an alternate type of care for the patient. This is where hospice comes in, to offer comfort and support for the remainder of the patient’s life.

The treatment mode called hospice care, or palliative care, is health care given when there is no cure. This is sometimes called “comfort care.” Hospice care is begun when someone has an illness or injury for which medical treatments are no longer effective. There are residential hospice facilities, as well as certain rooms designated in a hospital or a general long term care facility as hospice beds. There is hospice care in the patient’s home, with home health care agency staff providing intermittent care. Medical staff will help the patient and family determine what care is most appropriate, while acknowledging that even the best of plans may have to be modified as the illness progresses.

Hospice focuses on caring, not curing, and in most cases care is provided in the patient’s home – many have voiced their preference to “die in my own bed.” However, at times the typical progress of the person’s disease may be such that special sorts of care are most easily managed in a facility other than one’s home. Hospice services are available to patients of any age, religion, race or illness. Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs and other managed care organizations. Hospice facilities must meet the federal regulatory standards and requirements for licensure to operate their business.

The hospice care team includes the patient’s personal physician, hospice physician/medical director, nurses, home health aides, social workers, clergy, trained volunteers, and occasionally speech, physical, and occupational therapists. The more common services provided by the hospice team include:

  •  Manage pain and other physical symptoms;
  • Assist the patient with emotional, psychosocial and spiritual aspects of dying;
  • Provide medications, medical supplies and equipment;
  • Coach the family on how to care for the patient;
  • Deliver therapy care when needed;
  •  Make available short-term in-patient care when needed for additional pain management or to provide respite for family caregivers;
  • Provide bereavement care and counseling to surviving family and friends.

While remaining at home for hospice care sounds perfectly ideal, there are some things to consider. The family members living at home, or coming in frequently, will find that they need to keep up with doing the household tasks of cooking, cleaning and laundry. Taking care of a loved one is emotionally draining, and often energy wears down in ways that are not typical. When the patient is restless or wakeful at night, the family caregiver may miss much-needed sleep. The advantage of having the care provided in a residential hospice is that they have 24-hour staff members who do all the household tasks, as well as care for the patient – and can provide hot meals, coffee and cookies to families and visitors. Hospice care suites include sleeping options for family members, though there are times when family members need a night at home to benefit from some restorative sleep time.

It is important to say that hospice care is not limited to six months of service. The Medicare hospice benefit requires that a terminally-ill patient have a prognosis of six months or less. There is not a six-month limit to hospice care services. (Read that sentence again please; it is very often mis-quoted.) Hospice eligibility requirements should not be confused with length of care. A patient in the final phase of life may receive hospice care for as long as necessary when a physician certifies that the patient continues to meet elibility requirements. Under the Medicare Hospice Benefit, two 90-day periods of care (six months) are followed by an unlimited number of 60-day periods of care service.

A closing prayer: Loving God, your heart overflows with compassion for your whole creation. Pour out your spirit on all people living with illness for which there is no cure, and on their families and loved ones. Help them to know that you claim them as your own, deliver them from fear and pain, and assist us in ministering to their needs; for the sake of Jesus Christ, our healer and Lord. Amen.

CANCER . . . basics and overview

This is the 2nd of two blog entries about cancer. Last month included the warning signs as well as other information to begin this discussion. This entry will expand on details of diagnosis and treatment.

When there are changes in an individual's health status, the physician will initially perform a physical exam, evaluating the skin, any changes in or abnormalities of lumps or skin changes, as well as a firm palpation of abdomen to feel the contour of internal organs for normal or abnormal surfaces there. If there are noted changes, the physician will commonly have some testing done to identify whether the symptoms are resulting from cancer. Cancer screening procedures will often reveal cancer at its earliest stage which provides the best chance for cure or reasonable control. Blood and urine tests reflect variations in health also.

The presence of abnormalities prompts biopsy, or xray, scan, or electronic imaging to help identify the status of the area of the body under suspicion for disease. When cancer is confirmed or strongly indicated, the primary care physician will likely refer the patient to a cancer specialist, known as an oncologist. The medical specialty of oncology may be further identified by physicians who specialize in particular types of cancer such as blood cancers, skin cancers, lung, gastric, bone cancer, for example.

When a cancer is identified and confirmed usually by a biopsy, further diagnostic testing is done to determine whether the initial cancerous tumor has spread to another part of the body., When there are distant tumors, the cancer is then termed metastatic, or the distant (within the body) tumor is referred to as metastasis. The biopsy results contribute to the identification of a particular stage of cancer, otherwise known as the severity of the disease. Stage I is the earliest stage of cancer, with greatest chance of successful treatment. Stage IV is the most advanced stage of the disease, with a rather guarded prognosis. The biopsy results provide detailed information about the configuration of abnormal cells, which are categorized by what types of tissue they affect, which, in turn, determines the prognosis and the most effective course of treatment.

Treatment options for most types of cancer include one or more of the following: surgery, radiation, chemotherapy, hormone therapy, targeted drug therapy, stem cell transplant, and clinical trials. Not all of those treatments are used for one specific cancer; the treatment is tailored to the specific cell type of the cancer as noted in the report of the pathologist. The pathologist is a medical doctor who specializes in the identification of cell-types from a biopsy; the tissue is examined under a microscope for extent and severity of the cancer specimen. The extent of the treatment is determined by how the cancer responds to treatment, and whether the treatment will improve the prognosis or length of life in the setting of the particular cancer status.

A cancer diagnosis can be a life-changing event in an emotional, physical, and spiritual way. Often it is difficult to know what to do first. It takes time to gather medical information, evaluate options, and partner with your physician to explore the best treatment option. As the patient, or as a family member of a patient, learn enough about the specific cancer to make decisions about the care that is best for you. Keep family and trusted friends close, and closely informed. Keeping personal relationships strong provides support when you may feel overwhelmed by the situation. Find someone to talk with, someone who is a good listener and who knows your situation. Seek out support groups affiliated with hospital or clinic.

Much additional information is available through the National Cancer Institute and the American Cancer Society.