Questions

 Part A: Advanced Directives and A Living Will

Simply stated, a living will is documentation of a patient’s wishes concerning end-of-life care. While the patient is of sound mind, he or she signs a written record of what present and future treatment is acceptable or unacceptable. It is signed, dated, and witnessed and serves as advance directives for when the patient is too ill or unable to make his desires known. A living will assures that treatment for the patient will be limited to comfort care and pain and symptom management. It provides a written record so that the patient’s life will not be unnecessarily prolonged against his or her wishes.

When your patient is placed on a hospice program, the visiting nurse will mostly likely present the patient and family with a standard living will that will list several treatment options. For example, it will list the use of a feeding tube or other artificial nutrition or hydration that may or may not be desired by the patient. Other options are listed as well. Patients may choose which treatment options they want performed or can decline any treatments listed. 

I have known devotees who wrote their own living wills that not only had a checklist of interventions to be accepted or rejected, but also stated their wishes for specific devotional practices to be performed at the time of their death. For example, one may choose to write, “The chanting of the holy names should be spoken or sung close to my ear from the time I am unconscious to the time of my death.” In the book, The Final Journey, there is an example of an excellent living will written by Kusa devi dasi, a senior disciple of Srila Prabhupada. (It is advised that any living will be discussed with a legal representative to assure it will be upheld.) Whether the terminally ill Vaisnava chooses to write his or her own living will or simply signs the one offered by the hospice agency, there is usually space for additional comments. The patient may write what devotional practices he wishes to be performed if and when he is unable to do so himself. In addition, some devotees include such statements as, “I desire that my body be cremated and the ashes distributed in the Yamuna River in Vrindavana, India.”

In any case, a living will protects the rights of the patient to die with dignity and in the manner he or she chooses. It speaks for patients when they are no longer able to speak. In many cases, it helps to relieve any guilt feelings that a family member may experience when rejecting aggressive treatment for the patient, such as a blood transfusion, for example. Patients have already spoken and have documented their desires so families can feel a sense of relief at not having to make these decisions for them in the future. In addition, a patient is often required to choose a Medical Power of Attorney (POA). The POA can be a trusted friend or family member. However, in most states he or she is required to be at least 18 years of age. The Power of Attorney will speak on the patient’s behalf if and when he is unable to make his desires known. An alternate POA may also be listed in case the first Power of Attorney is unable to make a medical decision concerning the patient.

For those of you residing in the United States, the link below will take you to a site that sells Living Wills. Just click on the state in which you live and you will see how to purchase a Living Will that complies with the laws within your state.

Part B: Spiritual Pain in a Terminally-Ill Patient

In any culture, spiritual pain is experienced on some level by most patients who face impending death. For a devotee, this is also true. When a devotee of Lord Krsna is given a prognosis of six months or less, each moment becomes crucial. The patient may feel a sense of urgency to make spiritual advancement, yet simultaneously feel guilty when remembering even one moment that was not used in the Lord’s service. He may suddenly question his faith or feel anger toward the Lord for placing him in this situation. (“Why me?”) Spiritual pain may take the form of hopelessness or meaninglessness. Often, patients express fear and confusion as to why the Lord seems to be “punishing” them after they have lived a good and pious life. These feelings of spiritual pain can cause even more anguish when the patient is also burdened with physical pain that has not yet been resolved. Therefore, a patient’s physical pain and other disturbing symptoms must be controlled before the issue of spiritual pain can be addressed.

Spiritual pain can manifest in many ways. Patients may feel abandoned by God and therefore extend this sense of abandonment to family members and friends. When they speak of loved ones who never visit or of feeling alone and isolated from family members, it may be a reflection of how they are feeling about the Lord. Often, loved ones are also experiencing their own spiritual pain and struggling to make sense of a very difficult situation. The lives of family members and friends are suddenly turned upside-down and the thought of losing someone they love sooner than expected suddenly creates what is know as “anticipatory grief,” or “pre-death bereavement.” Loved ones experience anticipatory grief when they realize that the death of someone dear to them is unavoidable. Patients experience this when they truly understand that their life has suddenly been cut short of what was expected.

To assist in healing spiritual pain, many hospice professionals perform a type of “memory therapy” with their patients. When patients tell their life story and remember details of past experiences they thought were forgotten, it often assists them in seeing the present situation from a new perspective. For devotees, it may be helpful to remember how they met Srila Prabhupada or the disciples of His Divine Grace. If it applies, ask your patient to tell you which events led to formal initiation. Ask if there are any photos they wish to share. (This helps to prompt memories.) Encourage storytelling about his or her favorite ways to serve the Lord. Ask your patient how you can arrange for him to teach others about his specific service while he is still able to do so. Suggest that he write down his knowledge of a previous service, such as cooking for the Deities, for example. This knowledge can also be recorded on a cassette. Assisting in this way will enable your patient to “hand down” his or her knowledge to others. Every Vaisnava deserves the opportunity to leave a type of legacy to the society of devotees. Most importantly, become a good listener! Friendship is essential when offering spiritual support. Create of mood of love and trust with your patient. Assure him that anything he reveals will be held in the strictest confidence and keep this promise. Be sensitive and empathetic to anything that is said. Offer to pray aloud with your patient, chant the Hare Krsna mantra with him, and read aloud Srila Prabhupada’s books. Offer to play a soft bhajan or read aloud the prayers by the great acaryas, such as Srila Bhaktivinode Thakur. Allow your patient to feel comfortable, not only conversing about life, but also about death. If you are comfortable with the subject, your patient will also become comfortable. As much as you may want your patient to quickly come to spiritual realizations, patience is required on the part of the caregiver. Remember that sound, spiritual conclusions can never be rushed, but must be nurtured.

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