For those wondering what hospice is about, and more specifically, what difference would it make in a person’s life who is dying, let me enlighten you. To understand hospice you must first understand the idea of palliative care. Palliative care is an interdisciplinary team approach to treat any serious illness without an aim to cure. Palliative care looks at the whole person, not just their illness. Persons with serious and chronic illnesses may choose palliative care in addition to curative care treatment. Hospice offers care, for persons with a life expectancy of six months or less, using palliative care. One does not have to be dying to receive palliative care, but everyone who is in hospice will receive palliative care. So let me explain then what a hospice patient can expect that may differ from another terminally diagnosed person who is not on hospice care.
Every week everyone involved in your case will get together to evaluate how you are doing, what is working, what is not, and any unforeseen issues on the horizon. That is what is known as an IDT (interdisciplinary team) meeting. Present will be your hospice doctor, your nurse, your health aide, your social worker, your chaplain (if requested), a volunteer representative and perhaps others such as a pharmacy representative. Each person will report their findings to the team and together the team will discuss your situation. Are you still able to care for yourself during the day? Are you angry? Sad? Depressed? How is your appetite? Do you have the necessary equipment to get around safely? Has anything changed this week? Are you on oxygen? Was a hospital bed delivered? Are you using the bedside commode more often now than the bathroom? Have nursing visits been increased throughout the week? Why? Have aide visits increased throughout the week? Why? Is your pain well managed? Are you comfortable? How many times have you needed breakthrough pain medicine? Does your long acting pain medicine need to be adjusted? What is the status of the radiation treatment you may be receiving to help shrink your tumor and therefore provide comfort(not cure)? How is your spouse coping? Do they need help? Do you qualify for Medicare or Medicaid? Do we need a volunteer to come in so spouse can do errands or get out once in awhile? Would you benefit from a volunteer or chaplain visit for companionship support? Pet therapy? Aroma therapy? What is the status of that military family member overseas? How are your children coping? To name just a few of the possible issues that hospice coverage includes and that will be discussed during a typical IDT meeting.
Now consider the alternative care approach, which is you and your caregiver make a list during the week of issues you want to discuss or need addressed and bring that list to your next doctor appointment. If something should come up before your next appointment, like increased pain, you can call your doctor’s office, speak with his nurse, who will then relay to your doctor, who will then have his nurse get back to you. Or perhaps your caregiver takes you to the ER since your pain issues occur after hours (did I mention that hospice offers a 24 hour nurse telephone contact number for support?). Alternative therapies are most likely found by you on the internet, or by recommendation of a friend which you can look into to see if you would like or can afford. Need help running errands but your loved one is too ill to go with you? You make calls to family, friends, neighbors, or maybe your church offers help. If you live alone and don’t have a network of support, chances are you do the best you can. If you are an elderly caregiver having difficulty bathing or caring for your loved one, you may be lucky to have your insurance cover a visiting nurse, or perhaps you, your children or someone you hire comes in periodically to help. Are your children out of state? Are they trying to assist you with doctor appointments, transportation issues, pharmacy pick ups while managing their own jobs, children, and family issues? Do you know if you qualify for Medicare or Medicaid? Do you understand the paperwork? Bottom line is that you and your family are responsible to figure out all these things yourself, and then track down the people who may be able to help you.
Obviously I am coming from a point of view based on my own personal and professional experiences which favor hospice involvement. And really why wouldn’t you if it were available, and it is, if you have been given a six month or less life expectancy. Your doctor may not offer to refer you to hospice, but that doesn’t mean you cannot ask to be referred. And just so you know, you can still be seen by your own doctor while receiving hospice care. Hospice only requires that you are no longer seeking curative treatment. Once you are in hospice, your medical expenses related to your terminal illness diagnosis will be covered by hospice, which means medications, equipment, your hospice team of doctors, nurses, aides, social workers, chaplains, volunteers, etc.
The hope with hospice care is that everyday you and your family feel supported and not alone on this journey. Together, your team will work not only towards alleviating any physical pain, but address as well, the emotional and spiritual issues that make up your life. You will be supported all along the way, and in the weeks after your passing may there be comfort knowing that the support for your loved one does not end, and will continue with periodic telephone calls made by our bereavement team. Studies show that this support actually helps reduce a lot of the stress patients and families go through managing care which results in a better quality of remaining life, which then translates into living weeks longer compared to those not receiving hospice and palliative care.