Hospice 101.1: The first meeting. A quick look at what can be expected when a patient goes on hospice

(Hospice care supports patients and families of any age. As my experience is predominantly with senior citizens, I will be discussing hospice for patients in that demographic. The information is generally applicable to all ages, however.)

Hospice is individualized care for patients (and support for their loved ones) who no longer receive treatment for their illness, there is no cure, and they are not going to survive the illness. Usually, a hospice team cares for patients in the final 6 months of life.

On hospice, patients choose to live the rest of their lives in the way that makes them most comfortable, with the focus being on what each patient’s goals are for this time. For example, while many patients will want to remain at home, some patients will choose to go to a hospital or skilled nursing facility for end-of-life care. These are individual choices that the hospice team will discuss with each patient.

Usually, a patient’s doctor or nurse practitioner recommends and notifies a hospice organization. If the patient is living in a retirement community, the community’s nursing staff, or a health care advocate, and/or a trusted friend and family member can help with a recommendation. Perhaps the patient knows of a local hospice that other friends or families have called for their loved ones, and they have spoken highly of that organization. Online searches are great, and representatives from hospices will come and talk to patients and loved ones in an informational setting. Hospice organizations are both non-profit and for-profit entities.

The doctor, patient or a loved one calls to make an appointment, and the hospice representative who is oftentimes a nurse, visits the patient at his or her home or hospital room. The representative will describe the organization’s services. At the meeting, the representative will ask the patient about his or her medical history. The hospice organization must have the medical diagnosis that makes the patient eligible for these services so they can approve the patient for hospice. The representative may have already received the diagnosis from the doctor, or will ask the patient for a copy of the diagnosis in the form of a doctor or hospital report. The nursing staff at a skilled nursing facility or assisted living community may have this report.

During the initial meeting, the patient, or an agent of the patient if the patient is unable to represent him or herself, will sign a contract for hospice care. The hospice representative will determine which professionals will be on the patient’s care team. Typically, there will be a hospice care manager, registered nurse or nurse practitioner, licensed vocational nurses, and personal aide. The patient will learn the name of the supervising physician. Hospice teams generally involve direct patient care through their nursing staff, however the nurses keep in touch with the hospice physicians. The entire care team meets regularly at the hospice office to discuss each patient, their status and care plans. A patient can request the doctor to visit, too. Hospice will work with Medicare or the insurer directly; the patient doesn’t have to do this.

At the first meeting, expect the hospice representative to discuss medical equipment the patient may need now, or may need as the disease progresses. Certain items can help to make the patient’s life easier and may also help keep the patient safe, especially from falls. Not everything has to be ordered now. Some items might include a hospital bed and bedside tray table; an oxygen concentrator, nasal cannula, mask and oxygen tanks (for when the patient leaves the bedroom); a nebulizer for breathing treatments; a commode toilet – a bedside unit or perhaps an extension for the patient’s own toilet with a higher seat and grab rails; a walker or a four-point cane; or a wheelchair.

The hospice representative will also discuss prescriptions; the nurse will review the medications the patient currently takes. Do not be surprised if hospice discontinues some of the patient’s regularly taken medicines and supplements. As hospice is for end-of-life care, medicines that are prescribed for long-term health no longer may be appropriate. Also, hospice can prescribe new medications for the patient.

In addition to changing the patient’s daily medication schedule, the representative will discuss a “care pack” of hospice-provided medications that will be delivered to the patient or to the nursing team at the patient’s residence. The care pack must be kept in a safe place, perhaps in the refrigerator or other location of the patient’s home, or at the nursing station of an assisted living community or skilled nursing facility. The patient may not need any of these care pack medications right away. They typically include: pain relief and anti-anxiety medications, drugs that prevent vomiting and nausea, anti-inflammatories, laxatives, anti-psychotics and medications that help reduce respiratory secretions at end of life. Hospice will direct the patient as to how and when the medications will be administered.

Also at the first meeting or soon thereafter, the patient will receive a schedule for hospice nurse visits. For example, hospice may determine that the nurse practitioner or registered nurse may visit once or twice a week. If desired, a care aide will be scheduled regularly to help the patient shower.

While a patient is on hospice care, do not expect hospice to provide nursing or care coverage 24/7. However, when a patient’s needs change, for example if the patient is experiencing more pain, or is having difficulty breathing, the patient, loved ones, or assisted living or skilled nursing staff will call hospice. At the initial meeting and most likely in subsequent meetings, the representative will explain that hospice is the patient’s first call, not 9-1-1. At that point, when called, a hospice nurse will come and assess the patient, determining if the care regimen needs to be changed. The nurse may decide the patient should have a licensed vocational nurse stay with the patient for a shift of 8-12 hours to provide nursing services at this time and to re-evaluate the patient. Near the end of that first shift, hospice will determine if another shift is needed. At some point, a patient may be stable and no longer need the shift care and evaluations.

If a patient does not warrant hospice around-the-clock care but still needs assistance, such as when a patient is a fall-risk, or is having difficulty doing daily tasks for him or herself, loved ones can step in to assist. Also, the patient or family members can work with a care agency, and hire caregivers for a partial day, full day, or for 24/7 assistance. The caregivers can help the patient with daily tasks such as: transferring from sitting to standing, eating and drinking, and going to the bathroom. The hospice organization, the patient’s own medical team, and/ or the nursing staff of the retirement community or skilled nursing facility can help determine which agency to contact.

Hospice does provide an intensive, round-the-clock care service for patients nearing death, ensuring the patient’s comfort. The oxygen, and the medicines from the care pack that the patient needs are dispensed per the hospice doctor’s orders. The hospice nurse advocates for the patient and calls the doctor to make adjustments to the patient’s regimen as needed.

Hospice offers all kinds of services for the patient and for loved ones, including counseling and chaplain services. Patients may choose to participate in massage therapy, and might enjoy music therapy. Animal lovers can choose pet therapy, where volunteers will bring their pets for the patient and loved ones to hold. All these services are printed in the hospice informational packet given to the patient at the first meeting. As a loved one nears death, this can be a difficult time for everyone involved, and these professionals and services can help with this transition.

In subsequent posts, I will discuss the differences between palliative, hospice and allopathic care. I will talk in more detail about different aspects of hospice care, things I’ve learned, and areas where it might be important to advocate for loved ones. Thanks for reading.

Kathy Galgano

March 4, 2018

Blogger’s Statement: I am a care manager for elderly clients; I am not a nurse or health professional. I will not give medical advice; please go to the doctor for that. That said, in my job and in my personal life, I have worked with medical professionals and hospice organizations for a number of people. It is important to remember that while the vast majority of health professionals provide care for our loved ones with the very best of intentions, people are fallible. We want the best care for those we love, and especially during the final stages of life. While I deeply believe that hospice and medical caregivers are well-trained, hard-working, generous and caring people, sometimes, despite best efforts, things may fall through the cracks. Such is life; nobody’s perfect. A loved one or care manager who knows the patient well can advocate successfully at times when the system is moving a bit too slowly. There are little things that are good to know if you or someone you love is entering hospice. I will discuss these in my blog posts.