The following are questions we all may have at some time in our lives. They may be in response to our personal experiences or those of our loved ones. The most important thing to remember is that there are options available.
1. Isn't hospice 'giving up?'
Did you know that some of the latest studies show that people actually live longer on hospice care than when undergoing aggressive curative treatment? Although many see choosing hospice services as not having any other options, hospice is actually an active treatment option. The Hospice of St. Mary's team is aggressive in managing pain and symptoms so patients can get out and enjoy those things that are most important to them. The team ensures that the patient and family's goals, hopes and wishes are always the primary concern.
2. When should a decision about entering a hospice program be made and who should make it?
It's appropriate to discuss all care options, including hospice, at any time during a life-limiting illness. By law, the decision belongs to the patient. Though some people view hospice as giving up, most hospice families say that being in hospice gave them precious quality time with their loved ones.
Because it can take some time for hospice professionals to tailor palliative care and pain management to each person, it is best to begin some level of professional care before a crisis exists. Families often feel it is "too soon" to begin hospice care and wait until death is very near. Bringing hospice professionals in at the last minute potentially limits their effectiveness. A better approach is to arrange introductory home meetings or hospice visits well in advance of need and obtain counseling from a hospice professional who can provide helpful suggestions on care arrangements. Put the support network in place before you need it.
3. Who should raise the possibility of hospice care - a doctor, the family or the patient?
Many physicians hesitate to broach the subject of hospice because they don't want to destroy your hope. Frequently, they will continue to pursue treatment because they assume that's what you want. In other cases, such as congestive heart failure or COPD, it is difficult for them to predict the rate of a patient's decline. When a doctor does mention hospice, even casually, you should discuss it immediately. In fact, he or she may actually be relieved if you bring up the subject. It is important that you understand the benefits of curative versus comfort care, and that you and your doctor share the same goals for maintaining quality of life. You and your family should feel free to discuss hospice care at any time with your physician, other healthcare professionals, hospice staff, clergy or friends.
4. What if our doctor doesn't know about hospice?
Most physicians know about hospice. It is the patient and the family's right and privilege to request information on Hospice at any time. If your physician wants more information about hospice, it is available 24 hours a day from Hospice of St. Mary's at 301-994-3023; or the Hospice Network of Maryland at 410-729-4571; or the National Hospice Helpline at 1-800-658-8898.
5. Can a hospice patient ever return to a curative medical treatment?
Certainly. Patients can be discharged from Hospice and return to aggressive therapy or go on about his or her daily lives. A patient may relinquish their Hospice benefit at any time and return to aggressive treatment. If a patient's condition improves, the hospice team may recommend discharge. If a discharged patient should later need to return to hospice care, hospice will be available at that time.
6. What does the hospice admission process involve?
Hospice will first contact the patient's physician to make sure he or she agrees that hospice care is appropriate for this patient at this time. A hospice nurse or social worker will then visit the patient and family.
The patient will be asked to sign consent and insurance forms. These are similar to the forms patients sign when they enter a hospital. The Hospice Informed Consent Form states that the patient understands that care is palliative, which means it is aimed at pain relief and symptom control, rather than curative. Services available will be described. The Medicare election form explains how electing the Medicare Hospice benefit impacts other Medicare coverage for terminal illness.
7. Are there any special changes or equipment needs that I have to make in my house before hospice care begins?
The hospice staff will assess your needs, make recommendations and help make arrangements to obtain any necessary equipment. The need for equipment may be minimal at first, but may increase over time. The hospice staff will provide ongoing assistance to continue to make home care as convenient, comfortable and safe as possible.
8. How many family members or friends does it take to care for a patient at home?
There's no set number. An individualized care plan will be developed that will address, among other things, the amount of care needed in your situation. Hospice staff members visit regularly and are accessible 24 hours a day, seven days a week to answer questions and provide support.
9. Must someone be with the patient at all times?
This will depend upon how ill the patient is when he or she is admitted to hospice. Generally, if a patient cannot get out of bed without help then they should not be left alone.
10. How difficult is caring for a dying loved one at home?
It's never easy emotionally and sometimes can also be physically and mentally draining to care for a terminally ill loved one. Nights can be very long, lonely and scary near the end of a lengthy, progressive illness. Hospice provides uniquely qualified nursing staff, home health aides and volunteers available around the clock, seven days a week, to consult with the patient and family. This support may allow a potentially scary time to be especially rewarding to the patient and family.
11. What specific assistance does Hospice provide home-based patients?
Hospice provides a team of nurses, social workers, counselors, home health aides, clergy, therapists and volunteers to care for each patient/family. Each team member provides assistance based on his or her area of expertise. In addition, hospice helps provide medications, supplies, equipment, hospital services and additional helpers in the home, if needed.
While most direct patient care is provided by family and friends, hospice volunteers are available to assist with errands and to provide a break and time away for caregivers.
12. Does hospice do anything to make death come sooner?
Hospice does not speed up or slow down the dying process. The hospice team is there to ensure comfort and to allow a natural death. Hospice provides its presence and specialized knowledge during the dying process.
13. Is caring for the patient at home the only place hospice care can be delivered?
No. Although the majority of hospice patients are cared for at home, care may also be provided for patients living in retirement communities, assisted living facilities and nursing homes. Many times, however, it is the patient's wish to remain at home where he or she feels comfortable and safe. Our six-bed Hospice House offers the comfort of a home, with care that may not be available at home.
14. Can a person who lives in a nursing home have hospice services?
Yes. Hospice care can provide an extra layer of care for a person in a long-term care or assisted-living facility. The hospice interdisciplinary team supports the patient/family unit as if the patient is in a regular home setting. The nurses collaborate with the nursing home staff to ensure pain and symptom control. The hospice principles of care and comfort can help enhance the care to a very deserving but underserved population.
15. How does hospice manage pain?
Hospice nurses and doctors are uniquely trained in the latest approach to medications and devices for pain and symptom relief. In addition, physical and occupational therapists are available to assist patients to remain as mobile and self-sufficient as possible. Hospice believes that emotional and spiritual pain are just as real and in need of attention as physical pain, so it addresses each. Trained counselors and members of the clergy may be available to assist family members as well as patients.
16. What is hospice's success rate in battling pain?
Very high. Using some combination of medications, counseling and therapies, most patients can have their pain managed at an acceptable level. Will medication prevent the patient from being able to talk or know what's happening? Usually not. It is the goal of hospice to allow the patient to be free of pain but also alert. By constantly consulting with the patient, hospice has been generally successful in reaching this goal.
17. Does the nurse stay at the house?
No, but the hospice nurse is only a phone call away 24 hours a day, seven days a week and any time a visit is needed. If there is a crisis, the nurse will stay with the family until the crisis is resolved.
18. Is hospice care covered by insurance?
Hospice is covered by Medicare, Medicaid and most private insurance policies. Hospice staff will gladly assist you by contacting your insurance company to assess benefits. No patient is ever turned away because of the inability to pay for care.
19. Are there any additional expenses the patient/family has to pay?
Medicare and private insurances cover all services and supplies for the patient related to his or her terminal diagnosis.
20. If the patient is not covered by Medicare or any other health insurance, will hospice still provide care?
Hospice of St. Mary's provides care regardless of a patient's ability to pay. We support ongoing fundraising events to offset the cost of those who are uninsured, or to provide comfort items that may not be covered by insurance. The hospice staff will assist families in finding out whether the patient is eligible for any coverage he or she may not be aware of. Care will always be provided.
21. What happens after the patient dies?
Hospice provides continuing contact and support for family and friends for a minimum of 13 months following the death of a loved one. Hospice of St. Mary's also sponsors bereavement groups and individual support for community members who are grieving the death of a loved one.