Whether you're ill or the patient is your parent, spouse or partner, sibling, child, other family member, or close friend, you'll have any number of questions about what the future holds. Here are some questions you may have.
A loved one has just been diagnosed with an advanced illness. Can the Alliance help us?
Almost certainly. Please call The Jewish Healing and Hospice Alliance regional care center nearest you: Jewish Board of Family and Children's Services in New York City, F.E.G.S. Health and Human Services System in Long Island, or Westchester Jewish Community Services in Westchester.
The Alliance can help you begin to sort through the many thoughts and questions the diagnosis has raised for you and all of your loved ones. We'll match you with a care partner who will be your advocate through the fears, stresses, and challenges that lie ahead.
Are we eligible to receive this help?
The Alliance's services are available to all patients facing serious or terminal illnesses and their families. You need not be religious or have any particular affiliation.
Is there a fee?
No. The Alliance's regional care centers offer consultation, support, and chaplaincy services at no cost, including help with applications and paperwork to obtain medical reimbursement or other benefits.
If the patient is not very ill right now, is it too soon to call a regional care center?
In fact, this is the best time to begin planning for the future. During this period, the patient can think more calmly and clearly about the choices he or she is likely to face.
Planning in advance means that when you have to make decisions about treatment or living arrangements in the future, things will go smoothly and according to the patient's wishes. With the help of your care partner, you can clarify the kinds of care the patient values most, and learn how to communicate that information most effectively to all the members of his or her care team as the illness progresses.
Some patients, for example, wish to pursue aggressive treatment options, while others decide to forgo cure alternatives and seek only palliative care.
What is palliative care?
Palliative care is dedicated to improving the quality of life for people with life-threatening or terminal illnesses — especially those with conditions that are progressive and increasingly limiting.
The goal of palliative care is to help each patient live as fully and comfortably as possible — and, should the end approach, to allow the patient to die with dignity, and without pain.
Palliative care doesn't seek to either hasten or postpone the end of life but is dedicated to providing relief from pain and discomfort for the patient. It offers a support system for relatives and friends during the illness and, if necessary, in bereavement.
How can I get palliative care for myself or a loved one?
With the help of your care partner, you can create a team of family, friends, and professional caregivers of different disciplines — all working together to meet the patient's medical, emotional, physical, and spiritual needs.
The palliative care team can include doctors, nurses, pastoral advisors, psychologists, therapists, social workers, nutritionists, and practitioners of alternative healing — in whatever combination will bring the patient the greatest ease and comfort.
Does asking for palliative care mean we've accepted that there's no hope for a cure? Is it really "giving up"?
By no means. You can request palliative care in combination with conservative or even extremely aggressive treatments that have complete cure as their goal. Palliative care is extremely flexible, allowing for choices from among all the appropriate treatments and therapies available. No specific treatment is excluded from consideration. Care can take place in many different settings too &mdash in the patient's home or in a nursing home, an assisted-living facility, a hospital, or a residential hospice.
What is a hospice?
The word "hospice" is used within the healthcare community to refer to palliative care focused on relieving the pain of very ill patients nearing the end of life. It is intended for patients who are no longer seeking a cure and want to remain as comfortable as possible in the time they have. Other hallmarks of hospice are counseling, spiritual support, and practical assistance for both the patient and for loved ones.
Most hospice care is provided in a patient's own home, so that during the last stage of life, he or she can be in a setting that feels familiar and comfortable, not alien or strange.
If the patient prefers in-home hospice care and receives the appropriate medical certification, he or she may qualify for the hospice benefit provided through Medicare, Medicaid, or another third-party insurance. Your care partner can arrange for you to talk with a hospice provider to assess the suitability of the patient's home or apartment.
When home hospice isn't an option, hospice can be provided in a hospital or at a nursing home or other long-term care facility, although the costs of room and board may not be covered by insurance.
Hospice care may also be provided at a hospice residence, such as the new Mollie and Jack Zicklin Jewish Hospice Residence.
Learn more about hospice care available through the Alliance.
How can I best prepare my loved one as his or her illness progresses?
Because each person's needs are different, your care partner can help you compile a range of questions that the patient and his or her family will want to consider. These include questions about the patient's wishes at each stage of his or her illness, such as:
- What will give the patient the most ease and make him or her the most comfortable? What are the options for relieving pain? Does the patient want to try alternative medical treatments?
- What should the medical team know about handling the patient's pain? Are there situations in which he or she would prefer to tolerate some pain to maintain increased alertness, or would he or she want to do everything possible to relieve all pain?
- Are there some treatments or types of care the patient wants even if they will cause unpleasant side effects? Does he or she want to know about all options, including invasive or experimental treatment, even as the illness worsens? At what point does the patient think the benefits of a treatment are outweighed by its ill effects?
- What type of emotional and supportive counseling does the patient desire? How would he or she like spiritual needs to be met?
- Can the patient receive all necessary care at home? Will the time come when assisted-living services or a nursing facility are needed?
- Who will speak for the patient if he or she becomes unable to do so?
When you feel comfortable that you know your loved one's wishes, they should be conveyed to all members of his or her care team. The more specifically you communicate the patient's wishes, the better the care and consideration he or she receives are likely to be.
What can I do to make things easier for the patient's family?
Above all, be sure that everyone knows emotional help is available.
Your care partner can help you find options for supportive counseling that the patient's family and close friends can participate in, individually or in a group, as they wish. Your care partner can also connect you with spiritual or pastoral resources to help them cope with sorrow and grief.
If it's appropriate, you may also want to suggest that the family consider forming a family council. Creating a group of this kind not only offers support for all its members, it can also be an important practical tool. A family can decide to make important decisions together; can opt to share caregiving responsibilities; and can apportion individual tasks, such as conducting research or serving as liaison to medical personnel.
