Lesson One:

Part A: Holistic Care and the Hospice Movement

Holistic care refers to the total care of a patient in which the physical, mental, emotional, and spiritual needs are considered. Because hospice care encompasses holistic care, hospice professionals address the total care of one who is facing death. In addition, the hospice philosophy involves caring for the patient and loved ones as one unit. Therefore, the mental, emotional, and spiritual needs of the family members are also considered. It is never easy for family members and close friends to watch a loved one come closer to death. Often, it is not only the patient who may feel anguish, frustration, depression, and hopelessness, but family members may experience similar emotions. Those who work in hospice are trained to be aware and sensitive to the multifaceted needs that can arise within a family at this very difficult time.

Although all of the concerns of the patient and family are addressed, it is essential that the patient’s physical pain first be controlled before he or she can deal with emotional, mental or spiritual pain. (Spiritual pain will be addressed in further lessons.) Therefore, the first goal of the hospice nurse will be to relieve the physical pain of the patient. After the patient is as pain free as possible, he or she will then be able to work on other stressors. If you have ever experienced severe physical pain the only thing you were most likely thinking about was how to get relief. After that, any emotional turmoil you may have been feeling could be more easily addressed. In other words, the physical distress must be relieved before the patient can work on other issues.

If you are preparing to be a caregiver for a terminally ill devotee if and when the need arises in your community, chances are your patient will be placed on a home hospice program. Basically, this means that a registered nurse will make frequent visits to the home to assess the patient, manage his or her pain and other symptoms, as well as discuss any concerns you or other loved ones may have. Hospice involves a team approach. The team members usually include a physician who is the medical director, a registered nurse, a social worker or counselor, a pastor, a volunteer, and a nurse’s assistant. The patient and family may choose which services are needed at a particular time, but the nurse must make scheduled visits to assess the patient’s pain level, manage other symptoms, and order any necessary medical equipment such as an oxygen concentrator, bedside commode, etc. The nurse will most likely be “the eyes and ears of the doctor.” He or she will be in touch with the other hospice team members and will attain the proper medication as ordered by the physician.

I have taken care of many patients from large families who did not accept visits from a nurse’s assistant because family members insisted on doing all of the patient’s personal care, such as bathing, dressing, changing linens, and feeding the patient when this became necessary. Similarly, some patients do not see a need for a pastoral visit. As in the case of a Vaisnava patient, he or she will probably not feel a need for this service as well. During the initial visit, the nurse will explain the services offered by that particular hospice and will give you a packet with contact information. The needs of the patient and family will most likely change as the disease progresses. What may not be needed at first, such as a nurse’s assistant, for example, may be of great value further down the road. It is not humanly possible for one caregiver to perform 24-hour care. It is unfair to expect this of yourself. Sooner or later you will require someone to relieve you. Hopefully, there will be other family members or friends to provide this relief. Even with this assistance, remember that the hospice team is also there to help.

Part B: Communication With Other Caregivers

If you are the primary (main) caregiver then you have the responsibility of organizing the care of your patient in a home hospice situation. When first diagnosed, your patient may not require round-the-clock care, but as his or her disease progresses it is inevitable that 24-hour care will be needed. It is recommended that you have a meeting with all others involved in the patient’s care. (If needed, you may want to ask the hospice nurse or social worker if he or she can take the time to help with this meeting.) Have a monthly calendar available and ask for members of the “caregiver team” to sign up for the days and hours they will be available to assist. Fill in any time a devotee in your community has volunteered to read Srila Prabhupada’s books to your patient. These moments exchanged between devotees become even more precious at this time. Be sure to include even short visits from other Vaisnavas.

Make a list of everyone’s home and work phone numbers and post it where it can easily be seen, such as on the refrigerator in the kitchen. In addition, hang the completed calendar in a prominent place so it is clear who will assist and when. Near the calendar place the contact numbers of the hospice staff. I also recommend having a notepad and pen nearby so messages do not get misplaced. These small details only help to enhance the communication between caregivers.

When one caregiver is leaving for the day and another is coming on his or her “shift” be sure to communicate in a clear, concise manner. In Kali yuga memories are short so it is best to have a notebook next to the patient’s medications. Each caregiver should list the times each medication was given and if there were any adverse side effects and what was done about them. In the book, The Final Journey, there is a very valuable chart that demonstrates how to document all of the care that was given and when. This chart may be helpful to ensure good communication which is the key to any successful caregiver situation.

International Association for Hospice and Palliative Care

This site link above offers free newsletters, informative articles, and offers videos and books you can purchace for in-depth study on hospice and palliative care. They also offer a directory of hospices in many countries around the world.

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Lesson One