Care providers hope to treat and control as many symptoms associated with an advancing illness: NOT just the physical problems such as pain and harsh side effects, BUT also the associated demoralization, difficulty with coping, anxiety, stress, uncertainty and fear.

Acute palliative care is generally offered to patients in a hospital or other acute care setting when they are facing a life-threatening or life-limiting condition with an uncertain, unfortunate or poor prognosis. This type of care and the associated constellation of symptoms is simply an extension of good primary care. However, because of the advanced and urgent nature of how patients present at that time, these types of intractable symptoms are rarely treated by Primary Care Providers, care in this environment is often performed specialty-trained personnel: Cardiologists, Oncologists, Hospitalists, Surgeons - AND PALLIATIVE CARE SPECIALISTS.

When patients are discharged, sometimes Clinical Providers find it still difficult to manage these patients’ symptoms, let alone address the other emotional and psychosocial issues that usually come with advanced illness care. So many questions, so many options….where does one start? It is not simply documenting a Health Care Proxy….There is so much more to the journey that could use support and direction.

Hopefully, the Primary Care Provider or Specialist recommends finding a Palliative Care team to be a secondary resource for these questions and concerns. This way, the family and patient’s best interests are fully considered, and they may be reassured that the most evidence-based and appropriate care is being offered. Unfortunately, Palliative Care itself is not usually covered by insurance unless the patient has a rider or other insurance addendum. Health Savings Accounts are useful for this, as well as there being some secondary insurances who cover these options.

Although limited in the state of New Hampshire, there are several Palliative Care options available. Sometimes, families hesitate to enroll at all or at least into one of the ‘larger’ Palliative Teams because the larger infrastructure and ‘rules’ make patients and families feel too much of the ‘reality’ of inevitable. Some people hear the word PALLIATIVE, and immediately sense images of hospice and death.

Technically, palliative care is a more refined and specialized primary care service that should be offered any time after one is diagnosed with an advanced or life-limiting illness. PALLIATIVE CARE should be combined with active treatments to prolong life, as well as to improve one's quality of life - sometimes it is simply symptom management for fatigue, anxiety, insomnia, depression, constipation, anorexia and/or pain. Hospice, by definition, is the insurance term used by Medicare regarding payment of palliative care provided to patients and families in the last six months of life.

For those who are still having difficulty coming to terms with an advancing illness, it is sometimes easier to work with just a Physician and then build his or her own TEAM. This way a more intimate therapeutic relationship can develop, which may facilitate improved symptom and medication management, as well as assist with education and communication surrounding this difficult time. The North Shore Osteopathic TEAM consists of only who the patient and family are ready to have participate, and for however long they feel they need this support into the foreseeable future - whether it is days, weeks, months or years thereafter. The North Shore Osteopathic TEAM will reach out to other professionals - with the patient and family’s consent - for psychological, spiritual and financial support. Having the patient and family chose their own TEAM members may be the best way to assist in educating family members how to navigate through troubled waters, as well as teach them how to best care for the patient using their own resources - ultimately saving money and gaining autonomy in making these important decisions, rather than just taking whomever is assigned at that time. North Shore Osteopathic is also willing to assist in finding home health support services and transportation, as needed.

When to Consider Palliative Care

• When significant illness or injury has resulted in permanent life changes that may affect quality or quantity of life

• When curative therapies are no longer effective and the patient's and family's goals of care are changing

• When difficult symptoms compromise one’s ability to continue treatment

• When patients, families or significant others experience emotional distress, hopelessness or demoralization

• When documentation on or simply a discussion about wishes and treatment preferences is needed

• When patient’s advance directives do not support their current treatment plan

• When a patient has been readmitted for more than twice in six months for treatment of a chronic or advanced illness

COMPASSIONATE SUPPORT IS PROVIDED BY:

• Exploring patient goals and wishes

• Clarifying diagnosis, prognosis and treatment options

• Reviewing and encouraging preventative medicine opportunities

• Supporting the completion of an advanced directive / MOLST form

• Promoting ongoing communication between the physician, patient, family, and multi-disciplinary team

• Advocating for the patient when she or he is having difficulty communicating wishing about treatment options or even cessation

• Providing information and support for families faced with difficult decisions about appropriate care and support outside the hospital or office settings

• Discussing symptom management options such as pain, nausea, anxiety, insomnia, poor appetite, and delirium

Questions to Ask the Patient:

• Who should make healthcare decisions on your behalf if you are unable?

• What are your greatest concerns or fears?

• What do you consider as having good quality of life?

• If prolonged life does not give you quality of life, do you still want aggressive medical interventions if prognosis is grim or futile?

• If you could decide, what would you want done in such circumstances?

• How do you want to live out your last 6 months of life?

• Do you wish to become an organ donor?

Questions to Ask YOUR Healthcare Team:

• What is my working diagnosis?

• What is my prognosis . . . meaning, is my diagnosis life-limiting?

• What are my treatment options?

• What is the most likely outcome for each treatment option?

• What are the burdens and benefits of each option?

• How much time or improvement in symptoms will I gain by undertaking aggressive treatments versus more conservative treatments?

WHAT IS HOSPICE?

It is very important to know that Medicare pays for HOSPICE benefits (ex., medications, clinical and sub-clinical visits, social work and chaplain support, hospital bed and equipment for mobility, toileting and hygiene) for patients who are not anticipated to live more than six months. It is also important to understand that these benefits are offered using specific medication formularies (not all medications will be paid for or ‘permitted’ unless medically necessary to treat the ‘hospice diagnosis’). Although limited, hospice services do NOT provide less than adequate care. I would be more than happy to counsel patients and family members regarding Hospice Eligibility and its associated parameters and limitations. It is a Palliative Care Specialist’s duty to anticipate, prevent and relieve suffering for all involved throughout the trajectory of care - so that any decisions made do not contribute to patient or caregiver grief, fear, burnout or financial distress.