Practical Considerations for living
with Life-threatening Illness
Often there can be a gap between seeing a possible need for further intervention and creating it. Looking ahead and preparing now will reduce stress and frustration for both the caregiver and the one being cared for. It will also reduce unnecessary discomfort for the patient. The following are things to consider. If you would like to discuss any of these or other matters, please email email@example.com.
Find medical care (doctor, hospice, nurse) that knows a lot about pain relief. Create a relationship with a healthcare provider early in the diagnosis. If you sense that the patient is having increasing pain or staying at a level the patient is complaining about, then they are not getting the pain relief they need. Keep a record of the patient’s pain by asking them several times a day what their level of pain is on a scale of 1-10. Share this with your health care provider. If the health care provider does not address the pain the patient is enduring, it is time to get someone who can manage the pain. Your health care provider should be sufficiently concerned about the patient’s pain level. No patient should suffer unnecessary pain.
What is Hospice Care?
Hospice care is a special kind of care that focuses on the quality of life for people who are experiencing an advanced, life-limiting illness and their caregivers. Hospice care provides compassionate care for people and patients who are no longer pursuing life saving treatments in the last phases of incurable disease so that they may live as fully and comfortably as possible. The hospice philosophy accepts death as the final stage of life: it affirms life, but does not try to hasten or postpone death. Hospice care treats the person and symptoms of the disease, rather than treating the disease itself. A team of professionals work together to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice care is also family-centered – it includes the patient and the family in making decisions. Hospice requires a 6-month prognosis; however, treatment for palliative care is encouraged.
What is Palliative Care?
Palliative care is medical care that is specifically designed for individuals diagnosed with a serious and/or life-limiting illness. This specialized care is delivered by a team that consists of doctors, nurses, social workers, and other specialists who work with a patient’s existing physicians to provide an extra layer of support. Palliative care emphasizes and prioritizes pain/symptom and stress management. While both hospice and palliative care focus on symptom management, palliative care can be used at any stage of an illness and can be used alongside curative treatment for the illness.
Getting a Commode
Do not wait until it’s exhausting and painful for the patient to go to the bathroom to get a bedpan, commode, and/or Foley catheter. Get these things before they are totally needed.
It is time to consider a hospital bed when the patient is staying in bed most of the day. A hospital bed will make being in bed more comfortable for the patient. Being in bed for prolonged periods of time can cause bed sores. Make sure you and your health care provider are checking for bed sores. Turning the patient frequently and investing in an egg crate mattress can reduce bed sores.
If your loved one is taking medication you should create a medication chart, especially if they’re taking pain medication and/or being cared for by more than one person. List the medications, their purpose, and how they should be administered (how much and how often). Make a chart of the day and fill in the hours when medications should be given. Have anyone that gives medication “sign off” on the chart so that no dose is missed or given twice. A simple chart creates safety and peace of mind.
Caregivers as “Gatekeeper”
People are going to want to visit and call to be friendly. The patient can get exhausted by having to participate in ongoing social visits. The caregiver needs to act as gatekeeper. Ask your loved one how much time she wants to spend with people and with whom. Remember that the “schedule” of visits she may want now can change quickly. The patient should not have to be responsible for disappointing people and should be able to refer people to the caregiver.
Develop a Caregiver Team
Are you getting tired, or burnt out? A part of taking care of yourself is looking ahead. You can’t be there 24 hours a day. You must take care of yourself if you want to give the best care to your loved one. Keep in mind you do not know how long you will be caregiving; plan long term. Who are the people that can help you? Find out what family and friends are willing to do. Help comes in many forms: visiting with your loved one so you can get out of the house for awhile, someone to help with the bills, the legal issues, kitchen help, helping with the chores, and the list is endless. Consider getting a nursing agency to help with the care needed, even for evening shifts so you can get some sleep. Helpful assistance from your friends and family can reduce stress and provide respite.
Have regular meetings with all the people who are helping in your caregiver team. Discuss how the situation has changed, schedules, changes in medicines or medical care, and if possible, have your loved one share her needs with the group. Make sure caregivers are informed.
The caregiver and the patient need breaks from each other. The patient needs someone, other than you, to communicate her needs to. Ask your loved one if they have someone they want to have visit (maybe on a regular basis) for sharing her emotions. She may want a friend, counselor, or a volunteer from our Open Circle Program to talk with. The caregiver also needs someone to talk with about the emotional issues that are arising. Reaching out can be helpful for both of you.
What is Medical Aid in Dying (MAID)?
Medical aid in dying is the practice of a physician providing a competent, terminally ill patient—at the patient’s request—with a prescription for a lethal dose of medication that the patient intends to use to end his or her own life. States that allow this practice (with different specific provisions) include California, Colorado, the District of Columbia, Hawaii, Maine, New Jersey, New Mexico, Oregon, Vermont, and Washington. Please note that the Living/Dying Project does not directly participate in this practice nor administers medications of any kind.
Where can I get help with medical paperwork, wills, advanced directives, and treatment plans?
A patient (or support person) seeking this assistance should speak to their medical professional (physician, nurse, social worker) for medical issues and can also seek out social workers provided by hospice or a hospital. An estate attorney can advise on ensuring that advance directives are properly documented and recorded. A trained and certified death doula could also be a resource for these needs. A Living/Dying Project volunteer can provide compassionate and spiritual care as one navigates this undertaking.
Marin and Sonoma County, CA
Ceres Community Project provides free meals to those dealing with health challenges.