Get to know your team
You and each member of your hospice team will decide how often you need to be seen. Some members of the team will come weekly; others may come less often and others more often. You, as the expert in what you need and the most important member of the hospice team, have a significant say in how often you need select services. After determining how often you need the services of each member of our team, our clinicians will schedule visits at a time of that is convenient for you and those involved in your care. They will also call the evening before or morning of scheduled appointments to confirm that the scheduled time is still convenient for you. You or those caring for you may also call for additional visits when urgent situations arise and there are issues which cannot be resolved by phone.
In terms of what you can expect from various team members, consider the following:
Your regular physician may continue to act as your primary care physician if you wish and he/she is agreeable or you may rely solely on the services of our Hospice Medical Director. If your personal physician chooses to remain involved in your care, one of our Seaport Hospice Medical Directors may well consult with him/her regarding your plan of care. Some of the key contributions of physicians involved in your care are:
- Providing medical direction to the hospice team in developing, implementing and revising the plan of care.
- Collaborating with other members of the hospice team in managing the symptoms which create discomfort and distress, including but not limited to effective management of your pain.
- Providing physical and emotional support to you and your family
- Coordinating your care with other physicians/medical providers
Your hospice nurse will coordinate many of the services you receive and will often be your primary point of contact for questions and concerns. She will frequently be the one:
- Assessing your needs and coordinating services with your physician or other members of the hospice team.
- Providing education to you and your caregivers about how best to manage your symptoms and promote your comfort and well-being
- Providing emotional support for you and those who care for you; this includes allowing you to express your feelings, fears and concerns and helping you to process those in a way that brings you comfort and clarity to the extent you are comfortable.
Many people have a misconception about social workers, believing that they work only for government agencies and are called in when there are issues related to safety, well-being and/or placement. This is not the case. In addition to helping our patients and their loved ones with community resources which might be helpful, they are also very helpful in providing emotional support. They might assist in any of the following ways:
- Providing information and making referrals for caregivers, homemakers, respite care, meal delivery services, legal/financial planning, final arrangements, housing or other community services.
- Assisting with the celebration of life by facilitating life reviews which allow you as our patient to recall those special moments of your life and then perhaps even finding a way to leave those memories as a lasting legacy for those who love you through the use of audio or video tapes, photos, letters or other medium.
- Exploring relationships that may need healing or strengthening as part of the process of evaluating your life and resolving issues or relaying messages in a way that brings you comfort and closure.
- Supporting you and those who love you as you deal with anticipatory grief and preparing them for the grief they will encounter in response to losing you.
Even if you are a very private person, please consider allowing the social worker to visit you and those who love you. While you are our primary concern, we know that losing you will have an enormous impact on those who love you. You might not need the services of the social worker, but your family and friends might. Consider giving them this gift of emotional support, even if you do not feel like you need it for yourself.
Many people question whether or not the services of a hospice chaplain are really needed, especially if the patient or family is not religious. Our experience is that the hospice chaplain is a good listener and support system for anyone, religious or not. Because of their specialized training, chaplains are equipped to assist patients and families in dealing with the anxiety, grief and loss that come with a serious illness.
If the patient and/or family hold to a spiritual belief system, the chaplain will support them in using these beliefs in a way that brings solace and comfort. If the patient and/or family have questions or unresolved issues, the chaplain will assist them in exploring questions and concerns in a way that brings closure. Either way, it is about the chaplain supporting the patient and family’s belief system, not imposing his own.
So, what does this mean for you? It means that the chaplain is another support system for you and those who love you and, if clarifying or calling on your spiritual belief system assists in this process, it is an arena in which he is entirely comfortable advocating for you…and if not, he is still available to you as another member of our team who cares for you and those who love you. As with the social worker, please consider allowing him to come for your family, even if you do not feel you need his visits for yourself. He may be able to offer them comfort as they learn to cope with life without you.
If there are religious traditions, sacraments or rituals which are important to you, please let us know. The chaplain or other members of your hospice team will work to ensure that these are made available to you wherever possible, even if it means our attempting to arrange it with someone in the community. We want you to support you in finding spiritual solace to the greatest extent possible.
Our hospice aides are available to assist with your personal care and train your family, friends and caregivers about how best to help you with these activities. These activities of daily living as they are called include bathing/showering, shampooing, toileting, grooming (hair, teeth, face, nails), skin care, dressing, and linen changes.
Your nurse case manager will tell the aide how often she wants her to come and the services she wants her to provide you so talk to your case manager about how best we can use these services for your comfort and your family’s support. Beyond that, all you need to do is have on hand whatever supplies you want her to use and be prepared to feel better after her visits as that is what we most often hear from patients about this service.
The Bereavement Counselor provides counseling, support and education for families and friends after the death of a loved one. These services are available for up to a year or even longer if needed to support your loved ones in coping with their loss. Services available include:
- Individual sessions with our Bereavement Counselor
- Grief groups throughout the county
- Information on the grief process, grief recovery, coping with loss, building new support systems, finding ways of honoring the loved one, and other topics meant to offer support and solace.
- Annual memorial events
Pharmacists with our contracted hospice pharmacy provider are available for consultation on how best to manage your symptoms or address any questions or concerns about your medication regimen.
As your appetite, food tolerance, and caloric needs change, we have a dietician available to ensure that your nutritional needs are met in a way that is safe and satisfying.
While physical therapy is not commonly used for patients receiving hospice care, we may call in a therapist to assist with your care if it is determined that this could assist with your strength, mobility or comfort levels.
Again, this is a service not commonly used for patients who are receiving hospice care, but we may call in a therapist to assist us in teaching your family or safely adapting your home environment to ensure independence and safety.
Speech and Language Pathologist:
This is another service not commonly used for patients who are receiving hospice care, but available should we need assistance with communication or swallowing issues.